Critical Reflections on the Pathological Demand Avoidance debate: A response to The Practice MK blog and discussion.

Critical Reflections on the Pathological Demand Avoidance debate: A response to The Practice MK blog and discussion.

 

Introduction.

This is a rejected article I wrote in July 2017; I have not updated it since then besides correcting a typo. My thinking has developed significantly since then. I standby most of the points in covered in this essay. It mainly got rejected because the article is not written to master’s level, due to the structure not being there and I have not evaluated (how and why) most of the points. It was rejected with an invitation to resubmit as this has the potential to be key disability studies (and PDA) literature. I have since, developed my academic writing as shown in Redefining Critical Autism Studies: a more inclusive interpretation (Woods et al 2018). I will provide the evaluation for most of the points in the PARC PDA Talk on the 15^th of May 2018 (Milton 2018).

 

Abstract.

I provide critical reflections on the PDA discourse using PDA blog and discussion of The Practice MK, a private practice specialising in autism. Their blog and discussion covers the current PDA debate, such as if the label can be diagnosed, benefits of its adjustments and how the label does not guarantee access to support or financial support. I argue the case for PDA has been overstated and that it is a redundant label, in particular the problems with the PDA behaviour profile, the lack of need for the label due to the Special Educational Needs or Disability code of practice, using critical autism studies to argue the universal benefits of its adjustments for all autistic individuals and how it creates social barriers for autistic individuals. In my view it is better to support Special Educational Needs and Disability labels, including implementing PDA derived adjustments for these labels.

 

Keywords: Autism, pathological demand avoidance, extreme demand avoidance, autism stakeholders, autism myths.

 

What is Pathological Demand Avoidance?

Elizabeth Newson first proposed Pathological Demand Avoidance (PDA) in 1980. Newson created a behavioural profile for PDA which included: passive early history in first year, resistance to and avoidance of ordinary demands of life using essentially socially manipulative strategies, surface sociability with lack of social identity, lability of mood due to need to control, comfortable with role play and pretend play, language delay, obsessive behaviour and neurological involvement. The demand avoidance is deemed pathological due to the effect on the individual’s day to life. There is some debate over the ontological status of PDA; if PDA is a form of autism spectrum, a separate syndrome (Newson et al 2003), its behaviours are explained by other labels (Gillberg et al 2015; Langton and Frederickson 2016; Woods 2017a) and a method of propagating the commodification of autism (Woods 2017a). Despite this, PDA is increasingly being discussed in the United Kingdom (UK), significantly receiving the support of National Autistic Society (Goodsell 2017 and Goodsell 2017; Langton and Frederickson 2016) and this is important due to the prominence of NAS a source on online autism information (Leatherland and Chown 2015).

 

What is discussed in The MK Practice PDA blog and debate?

The MK Practice is a private practice based in Milton Keynes, consisting of a multi-disciplinary team specialising in autism. Recently after requests from parents to diagnose PDA, 2 senior practice practitioners published a blog focusing on PDA (Goodsell and Goodsell 2017). Subsequently, a discussion has ensued regarding the merits for PDA. Goodsell and Goodsell provide a balanced and concise account of the discourse around PDA, culminating in a case study where they diagnosed a client with attachment disorder, only for another clinician to diagnose PDA 6 months later. A discussion followed debating the merits of PDA, initially focusing on if PDA can be diagnosed and whether a PDA diagnosis is a suitable label instead of attachment disorder. A view prevailed that attachment disorder was the correct label, due to a recent meta-analysis concluding autistic individuals can form selective and secure attachments (Goodsell and Goodsell 2017). The latest reply is from another PDA advocate, espousing the frequent arguments for PDA and critiquing the views of Woods (2017a) and Milton (2013a). It can be viewed that the posts of the parents are based on largely emotive opinion that falters against critical thinking. I will explore this later in the article.

 

What is the case for PDA?

The argument that PDA exists and the benefits of a PDA label are thoroughly explored by The MK Practice PDA blog and discussion (Goodsell and Goodsell 2017). The case for PDA can be summarised into the following:

1) There is a distinct PDA behavioural profile, which is distinguishable from other labels.

2) PDA has a separate list of adjustments compared to autism.

3) Autism adjustments do not work for PDA, while PDA adjustments do work for certain individuals, therefore it exists.

4) PDA provides an explanation of individual’s behaviour and provides and can lead to more appropriate adjustments which remove social (primarily educational) barriers.

5) Individuals with PDA can cause numerous issues for parents and professionals; therefore it is needed to assist these stakeholders.

6) The National Autistic Society, large numbers of parents and professionals believe PDA exists, therefore it exists.

On the surface points 1, 2 and 4 are a fairly reasonable justification for PDA, even so there are issues with these points; for example with point 1 simply because there is a PDA behavioural profile, this is not proof that it must exist. The logic behind points 3, 5 and 6 raises concerns. In particular for points 5 and 6 there seems to be an air of desperation to justify PDA, as they are being used in place of empirical evidence for PDA. Milton (2013a) suggests there could be a struggle for power in the PDA discourse, which point 5 would indicate is the case and that further research is needed to explore this. In the next section I provide an in-depth case against PDA.

 

The empirical evidence for PDA.

Goodsell and Goodsell (2017) discuss recent research by O’Nions et al (2014) but not work by O’Nions et al (2016), which can in theory be used to diagnose PDA. This has been done by developing the “Extreme Demand Avoidance Questionnaire” (EDA-Q) for screening PDA traits by a clinician (O’Nions et al 2014) and using the Diagnostic Interview for Social and Communication Disorders when conducting a semi-structured diagnostic interview. The DISCO study was only conducted on participants suspected of having autism, does not include non-autistic participants (O’Nions et al 2016). There has not been any research to ensure that other non-autistic individuals suspected of having either an emotional of behavioural labels do not meet the PDA DISCO traits. This raises the prospect of spurious PDA diagnosis on non-autistic persons (Dore 2016). O’Nions et al (2016) by excluding those who are not believed to be autistic from the sample, are predisposing the results to suggest that PDA is part of the autism spectrum and therefore are prematurely ruling out PDA’s other possible ontological statuses. This indicates an attempt to control the evolution of the autism label (Woods 2017a).

 

The EDA-Q may not be reliable due to reliance on parents providing information (O’Nions et al 2014); this can differ from the information given by autistic children (Dillon et al 2016; Milton 2013b). Parents giving misinformation would explain the results of Gillberg et al (2015) of how 8 of 9 possible individuals did not meet the full criteria for PDA into adulthood. This could be explained by a struggle for power between parents and professionals versus autistic individuals, with parents and clinicians overstating traits and wanting to gain extra support.

 

In addition there are issues with the ideology of autism being used to support PDA, with it being a non-progressive medical model of disability (Leatherland and Chown 2015). For instance the demand behaviours of PDA are due to need to reduce anxiety (Newson et al 2003) and subsequently PDA is part of the autism, yet anxiety is not on the autism diagnostic criteria (American Psychological Association 2013; World Health Organisation 1992). Recently autism diagnoses are moving away from a categorisation approach to a dimensional approach, which PDA does not follow (Wood, 2017a); therefore it could be argued this recent research on PDA are not contributing to modern interpretations of autism. O’Nions et al (2014) and O’Nions et al (2016) are symptomatic of the underlying issues of Newson et al (2003) criteria, which were formulated in 1980 before widespread adoption of the triad of impairment and ignoring results from the exponential growth of autism research from the late 1990s (Lai et al 2014). More pertinently the recent PDA literature refers to the dated and mythical “typical” autism (Langton and Frederickson 2016; O’Nions et al 2016).

 

O’Nions et al (2014) is considered seminal work on PDA for being the first large scale study researching PDA, which argues the EDA-Q can provide a similar interpretation of PDA between clinicians and identifying parents. As previously described these results can be explained by parents and clinicians pursuing control over autistic individuals displaying challenging/ distress behaviour, thus these individuals cause problems for both parents and clinicians (Gillberg et al 2015; Langton and Frederickson 2016; O’Nions et al 2016). Due to the double empathy problem (Chown 2014; Milton 2012) and how the Predominant Neurotype individuals struggle to understand autistic individuals’ behaviour (Sheppard et al 2016), it is quite possible clinicians and parents are essentially interpreting what they wish to see in the actions of participants.

 

A similar situation is seen in Attention Deficit Hyperactivity Disorder (ADHD) with common classroom behaviour being pathologised to enable classrooms to function; therefore ADHD could not meet the criteria for being a disorder (Freedman and Honkasilta 2017). Similar to Woods (2017a) Freedman and Honkasilta (2017) argue that pathologising difficult behaviour as a result of mental illness shifts the burden away from Predominant Neurotype institutions adapting themselves to meet the needs of the diverse human population. This is a cause for concern as PDA could inhibit school’s abilities to assist teachers to meet their obligation for progressing autistic individuals learning (Department for Education and Department of Health 2015).

 

The conflict of interests of significant stakeholders.

There are concerns over the reliability of the data in studies by PDA academics. Often the support of the National Autistic Society and Autism Education Trust is used as evidence for PDA existing (O’Nions et al 2014; O’Nions et al 2016). However Woods (2017a) has noted the potential conflict of interest between the National Autistic Society and the Autism Education Trust has in supporting PDA, specifically how the National Autistic Society generates income from PDA related activities. Waltz (2007; 2012) explains how frequently research can be expressed in a manner that is beneficial for the research funders if they favour a particular aetiology of autism.  Autism charities can provide misleading information at odds with the autistic voice; this fits in with large disabilities charities controlling disability campaigning for their own interests (Oliver 2013). It could be argued that the National Autistic Society has vested interests in supporting PDA (Dore 2016), the results of O’Nions et al (2014) and O’Nions et al (2016) were generated in collaboration with the National Autistic Society Lorna Wing Centre (O’Nions 2017). In my view due to these issues I consider most of the data within these PDA studies to be possibly spurious and so I have treated the data accordingly by largely ignoring it while exploring the validity of case for PDA.

 

This article has provided critical reflections on the PDA debate, by using The MK Practice PDA blog and discussion. This article has explained the current PDA behavioural profile, before investigating the reasons why PDA is supported. On closer inspection reasons such as the significant issues persons with PDA cause parents and professionals and that the National Autistic Society and other stakeholders believe PDA exist are not empirical evidence for PDA existing. In the above section the article has thoroughly explored the case for PDA, contrasting it against other areas of the autism literature. I will now highlight unacknowledged issues against the PDA label from Critical Autism Studies perspectives.

 

What is the case against PDA?

The deconstruction of the PDA behavioural profile.

The MK Practice blog and discussion covers standard critique of PDA in the current debate, focusing on whether PDA behaviours are better explained by other labels and the limited utility of the label. However, these criticisms are limited in scope, as critical perspectives from autistic academics or activists have been neglected from the discourse, possibly overlooked in favour of views expressed by autistic PDA advocates. This is evidenced in The MK Practice blog and discussion and there is a lack of knowledge that PDA was discounted from the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition due to it counting as a false diagnosis for an attachment disorder (Goodsell and Goodsell 2017). Recently Woods (2017a) built on the work by Milton (2013a) to contribute to the PDA debate, suggesting that PDA is being used to convert autism self-advocacy into a commodity to be sold. This has helped to explore the possible motives behind PDA advocates. This leads on to further critique of the case for PDA.

 

The validity of the PDA behavioural profile with specificity of its behaviours being contested, as the following labels also explain its behaviours: autism, attachment disorder (Dore 2016; Milton 2013a), oppositional defiant disorder (ODD), anxiety disorder (Langton and Frederickson 2016), attention deficit hyperactivity disorder and conduct disorder (Gillberg et al 2015). As Lai et al (2014) explain, most of these labels are common comorbidities in autism. Of particular note is their comments related to oppositional behaviours as PDA does not fully explain these:

 

Oppositional behaviours could be a manifestation of anxiety, resistance to change, stubborn belief in the correctness of own point of view, difficulty seeing another’s point of view, poor awareness of the effect of own behaviour on others, or no interest in social compliance (Lai et al 2014, 3)

 

Dore (2016) develops the concerns over the specificity of the PDA behaviours, by explaining how non-autistic individuals could be miss-diagnosed as autistic or individuals who have suffered trauma. Dore further hypotheses PDA sections of the EDA-Q and DISCO (Onions et al 2014; O’Nions et al 2016) would provide PDA false positives if tested on Predominant-Neurotype persons with emotional or behavioural problems.

 

The mythical need for the PDA label.

It is argued due to the challenges individuals present for parents and professionals, there is a need for a PDA label to ensure adequate support is provided (Newson et al 2003; Langton and Frederickson 2016). It appears with further investigation that these challenges are common in the autistic population such as other people understanding and recognising their different needs to other people (Milton and Moon 2012; Milton and Sims 2016; Stewart 2012). Langton and Frederickson (2016) explore the educational needs of pupils believed to have PDA, comparing their results to those for autism; they found there are similar levels of statement of SEN to autism of 70% for PDA and 84% for autism, exclusion rates of 29% for PDA and about 20% for autism and unofficial exclusion rates from school of 48% for PDA and 55% for autism. Their results suggest that need for extra support for PDA is no different than that of autism and that significant extra support is needed for autism. To add context Langton and Frederickson (2016) there is no empirical to show that PDA based adjustments are more effective than autism adjustments for those diagnosed with PDA.

 

A key argument for need for PDA adjustments is that they are needed because individuals believed to have PDA display demand behaviours to avoid the anxiety caused by societal expectations. There is growing evidence from autistic academics and the autistic population that all autistic individuals’ mental health benefits from being in charge of their own lives, partially due to the pressures of conforming to societal demands (Milton and Moon 2012; Milton and Sims 2016; Stewart 2012; Woods 2017b). Autistic individuals also face additional societal pressures from psycho-emotional disablism (Milton 2013b; Milton and Lyte 2012; Stewart 2012; Woods 2017b), which factors into the higher suicide rates and potentially higher rates of self-harming for autistic individuals (Maddox et al 2017). The “need” for PDA is no more significant than the need for better support for the entire autistic population, which would likely benefit from experiencing PDA adjustments.

 

There is an artificial need for the PDA label, in order to access PDA adjustments. The adjustments for PDA should already be delivered under the Special Educational Need and Disability (SEND) code of practice (Department for Education and Department of Health 2015) and The Autism Strategy (Department of Health 2015); if autistic individuals are not receiving the required support due to not being treated as an individual then they could be discriminated against under The Equality Act 2010, for which the appropriate route for redress is through the SEND tribunals. Under the SEND code of practice, autism or other SEND labels is all that is required to receive PDA adjustments. This is critical as the UK government does not recognise PDA (Langton and Frederickson 2016; Woods 2017a). An autism diagnosis instead is needed to access support, services and legal protection under The Autism Act 2009, The Equality Act 2010 and other such legislation.

 

The need for PDA is artificial; the PDA label partially exists due to an assumption that as it is common practice it is therefore good practice. Madriaga and Goodley (2010) discuss how Universities adopted government guidelines on minimum adjustments for autism as common practice and it later became considered “good practice”. Treatment and Education of Autistic and related Communication-Handicapped Children are widely practiced, yet there is little evidence to support its effectiveness (Lai et al 2014). The notion that only this is a PDA adjustment could be bad practice, caused by false beliefs of “typical” autism, therefore this assumption should be ignored.

 

The wider implications of the PDA label.

Some practitioners and parents are supporting PDA to fill a need for more autism adjustments, due to current gaps in adjustments and understanding of autism. This is not surprising as 71% of the £4million UK autism research funding goes on genetic causes instead of services for autistic individuals; even then most interventions are aimed at autistic infants (Pellicano et al 2014). Inclusion as practiced in the UK education system is where SEND labels are required to access support. In this way the UK education system is set up to educate the mythical norm pupil (Milton et al 2016). Due to the lack of specific research and general adjustments for the UK autistic population, there appears to be a need for an additional label, in this case PDA. An alternative solution is moving the education system towards a more inclusive form of education, such as Universal Design for Learning, where pupils do not need labels to access support (Milton et al 2016). Advocating for PDA distracts from campaigning for moving towards a more inclusive education system, which benefits pupils of all SEND labels.

 

PDA could be blocking the development of more progressive social model inclusive education practices and therefore social justice for all stakeholders. This is as PDA is from a medical model of disability perspectives as PDA focuses on persons’ deviance from “typical autism” and the challenges this causes to other stakeholders (Langton and Frederickson 2016; Newson et al 2003; O’Nions et al 2014). Which is the opposite of the views of stakeholders in autism and wider inclusive education areas would like to see; more progressive social model adjustments (Dillon et al 2016; Hardy and Woodcock 2015; Milton 2013b; Pellicano et al 2014; Stewart 2012). PDA advocates are arguing for the use of a new label which is not needed to explain the actions of individuals (Dore 2016; Gillberg et al 2015; Langton and Frederickson 2016; Milton 2013a), this going against the notion that the UK education system is “needs-led” (Langton and Frederickson 2016). Subsequently PDA is fuelling the neoliberal infiltrated inclusive education discourse (Hardy and Woodcock 2015), further reducing the definition of the “mythical norm” (Milton et al 2016). In doing so PDA makes it harder for autism stakeholders to achieve social justice in education.

 

It is argued that PDA explains an individual’s behaviour and therefore removes social barriers. PDA creates social barriers by perpetuating the current medical discourse of autism of deficits and disorder, which will likely be psycho-emotionally disabling to autistic individuals (Milton 2013b; Milton and Lyte 2012; Stewart 2012; Woods 2017b). PDA creates further barriers for autistic individuals as it pathologises autism self-advocacy as non-“typical” autism behaviour (Milton 2013a); with it being promoted as a tragedy often found in disability charity discourses (Oliver 2013; Waltz 2012). PDA literature often claims individuals are socially manipulative (Gillberg et al 2015; Newson et al 2003; O’Nions et al 2014; O’Nions et al 2016). However due to the double empathy problem (Chown 2014; Milton 2012; Sheppard et al 2016) this could be Predominant Neurotypes misinterpreting autistic persons’ actions as being socially manipulative. When the Centres for Disease Control and Prevention expanded the codes for “wandering behaviours” this led to autistic individuals being sent to prison, by showing “wandering behaviours”, which are considered “atypical autism” (Graby 2011). PDA may lead to autistic individuals being imprisoned or sent to a forensic hospital for life, for asserting their self agency which can be misconstrued into a symptom of a mental disorder. This is a threat to autistic individuals’ human rights.

 

The Ableism and Internalised Ableism of Autism.

In recent years of Fiona Campbell (2008) on ableism and internalised has gained traction within Disabilities Studies. Campbell describes ableism as:

 

a network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical and therefore essential and fully human. Disability is cast as a diminished state of being human. (Campbell 2008, 153).

 

 

The concept of ableism can be applied to PDA to model the ableism of autism and subsequent internalised ableism of the autism community. The PDA literature frequently refers to the mythical “typical autism” (Langton and Frederickson 2016; O’Nions et al 2016). PDA is caste against this stereotype with assumptions such as autism adjustments do not work for individuals (Newson et al 2003) and that autistic individuals are incapable of role-play (Dore 2016; Milton 2013a).

 

Through such assumptions it can be argued that PDA is a diminished form of autism. Internalised ableism is the concept of how an oppressed group internalises the external oppressive discourse (medical based discourse for autism), through this the autism community segregates itself from each other and the non-autistic population. In doing so the autism community perpetuates the oppressive practices used to suppress it. PDA advocates acknowledge the controversial nature of the label (Newson et al 2003; Gillberg et al 2015; Langton and Frederickson 2016; O’Nions et al 2014. The discussion sections of The MK Practice (Goodsell and Goodsell 2017) and Dore (2016) show the emotive responses of PDA advocates challenging non PDA supportive views, is literally internalised ableism in action. It could be argued that PDA is part of a wider power struggle between traditional deficits/ disorder medical autism discourse and the modern autism as a natural difference neurodiversity discourse.

 

The ethical considerations of PDA.

Currently there is little debate within the PDA literature on the ethical considerations of the label; this is reflected in the lack of critical reflections on the wider implications of the label. This article has added to the PDA debate by critiquing key literature supporting PDA, by highlighting the perceived need for the label by clinicians, parents and the conflict of interests of stakeholders. Using critical autism studies I have grounded PDA in the wider autism discourse, highlighting there is no greater need for PDA than there is for more adjustments for the entire autistic population. Finally I discuss wider personal and societal impact of PDA, with its potential for enabling autistic individuals to be imprisoned for asserting their self-advocacy. I ethically oppose anything which propagates the negative deficit & disorder based language from the autism discourse. Such language is known to be psycho-emotionally disabling to autistic individuals (Milton 2013b; Milton and Lyte 2012; Stewart 2012; Woods 2017b). PDA is a socially constructed barrier to inclusive environments being developed for autistic persons; such a barrier should be vigorously removed using the social model of disability (Woods 2017b). The ethical issues resulted from the issues covered in this paper need to be expanded upon in future papers.

 

What is the verdict on PDA?

Using The MK Practice PDA blog and discussion this article has systematically explored the current debate on PDA and has offered novel critique of the label and its literature. It is my view that the case for PDA has been overstated, with significant claims lacking empirical evidence. This leads to significant doubts over the validity of the label and there needs to be further research into ‘who is it that needs to be in control’. It can be argued that PDA is already a redundant label due to the lack of merit of a PDA diagnosis and vice versa; other labels describe its behaviours, it does not ensure understanding from individuals, support (Woods 2017a) or legal protection and its adjustments can already be implemented through other labels such as autism. It could be argued that if PDA was proposed today in the United Kingdom it would struggle to be taken seriously due to the fundamental flaws in the arguments for it. There are serious ethical concerns over the label, which have yet to be debated. It is my view that it is logical to support more adjustments & research for autism and other recognised SEND labels, including using PDA based adjustments for these labels.

 

Disclaimer.

Riko Ryuki does not share Planet Autism’s views on vaccines and MSS, thusly Riko Ryuki does not associate herself with Planet Autism.

 

Latest article published.

I and others have a new article published Critical Autism Studies: a more Inclusive Interpretation, which can be viewed at the link below:

https://www.tandfonline.com/doi/abs/10.1080/09687599.2018.1454380?journalCode=cdso20

 

Autism Policy and Practice Call for Papers.

The autistic-led (emancipatory) good practice journal Autism Policy and Practice has issued a call for papers available at the link below:

https://www.openaccessautism.org/index.php/app/announcement

 

Grace Trundle’s Call Research Participants.

The purpose of this study is to investigate the relationship between Autism, ADHD, and personality and PDA. It also examines the relationship between PDA, conflict with the law, impulsivity, and emotionality. We are striving to further understanding of the aetiology of PDA.

The link to the study is – https://nottingham.onlinesurveys.ac.uk/individual-differences-autism-spectrum-disorder-and-patho-2

 

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