Researcher: Bernadette Louise. Supervisor: Dr Danielle Stephens-Lewis
INTRODUCTION
Autism spectrum disorder (ASD) is a lifelong developmental condition that involves persistent challenges in social interaction, communication, and restricted/repetitive behaviours (American Psychiatric Association, 2013). Parents of children with ASD often find themselves having their parenting ability questioned, being accused of fabricating the child’s symptoms, or that they are in fact, causing their children emotional harm (Eaton, 2018). Often, these accusations are labelled as Fabricated and Induced Illness (FII); it is considered synonymous with Munchausen’s Syndrome by Proxy (MSbP) and is not a formal clinical diagnosis. Factitious Disorder Imposed on Another (FDIoA) however is described as a diagnosable medical condition in the DSM-5 (American Psychiatric Association, 2013) and yet, FII appears to be being treated as equal in its risk factors. A lack of consistency around diagnosis creates confusion and a lack of clarity amongst professionals (Lazenbatt, 2012). This Researcher has seen accounts, often based on parent-to-parent/online forum support groups that suggest the number of accusations of FII within the Autism Community is substantial. It is not widely discussed outside of these safe forums due to the secretive, closed-door nature of Child Protection (CP) and the Family Courts system. Child Protection meetings and subsequent CP plans are initiated when Professionals believe there is “reasonable cause to suspect a child is suffering or likely to suffer significant harm” (Section 47, Children Act 1989), FII is classed as such. Consequently, a family will face a host of invasive investigative measures, possible court action and in extreme cases, the removal of the child/children into the care of the Local Authority.
RATIONALE
In a study of mothers of children with autism, and those who have autism themselves, one in five mothers reported being assessed by social services (Pohl et al, 2016). They were 100 times more likely to be investigated for FII, than those in the general population. The findings of Pohl et al found “high rates of surveillance by social services” as well as allegations of FII that were focused on mothers with autism and discrimination was shown towards them. As it is considered that Autism is a genetic condition (Gerdts et al., 2013) these findings not only have an impact on diagnosed autistic mothers but also on mothers of children who could have autism, or going through the diagnostic process. Without realizing their own autism, they may be facing continued stigmatization and potential discrimination (Gullon-scott & Bass, 2018). Discrimination is a valid basis for more research in itself, however, the updated guidance recently released by the Royal College of Paediatrics and Child Health, now includes the phrase ‘Perplexing Presentations’ alongside FII (RCPCH, 2021). This change in label is a cause for concern to parents who have children with genuine hidden disabilities, especially ones where the symptomatic presentation is, in it’s nature, perplexing (as with ASD, it can be). In light of the new phrase ‘Perplexing presentation’, it is particularly important to add parent voices to the conversation, which appear to be excluded from recent advancements. By seeking Parental experiences of their own FII allegations, this research study will give voice to those falsely accused and explore what intersectional factors may have had an influence over their situation.
METHODOLOGY
Methodological Theory
Current thinking largely comes from a quantitative Positivist or Empiricist epistemology implying that the knowledge gained is impartial and objective. Empiricists gather the data and attempt to make sense of it again with the perception that what is found out is an accurate and objective truth grounded in data (Willig, 2008) Pg 2-3. Even in some of the more qualitative studies, there is an emphasis on ‘little q’ research (Baron- Cohen et al., 2011; Bass & Glaser, 2014; Gullon-scott & Bass, 2018). In contrast, it is the aim of a Phenomenological ontology to utilise Researcher reflexivity and understanding as a way of tapping into the often-unspoken, subjective lived experiences of the participants (Langdridge, 2008). As a Critical Realist, I appreciate that there is a version of truth out there, but each truth arises out of a different set of circumstances and is comprehended differently by each person, notwithstanding the importance of time and place. Parker calls upon Critical Realists to recognise that ‘psychological facts’ are socially and historically constructed and it is the role of critical realist researchers to transform current notions of individuality and human nature (Parker, 1999). It is with this, that the subjective experiences of my participants can potentially open the doors on historically biased and discriminatory attitudes of parenting autistic children. In agreement with Burr’s perception that disability as inexplicably society-based and grounded within our own interpretations of our experiences, the idea certainly lends itself to an experiential outlook. Critically speaking, however, acknowledging that cultural and historical specificity of biomedicine is not universal and that disability is a matter of power relations (2003, p. 39) means an experiential thematic analysis (Clarke & Braun, 2013) is a useful tool in picking out any intersectional factors (Crenshaw, 1991) as themes. By asking of the study, what economic, cultural and societal norms these parents are being aligned against to arrive at allegation of FII, it raises questions about what happens when different factors arrive at a crossroads?
Participants
Members of the public will be asked to participate in research via an open call advert. All participants will be aged 18 and over. Participants will be parents who have been subjected to safeguarding investigations and/or interventions from Children’s Services, possibly including Child Protection plans. They will all have autism within the family.
Methods of Data Collection
Semi-Structured interview with be carried out with 6-8 participants (Clarke & Braun, 2013). There will be broad questions with the intent of letting them share their experiences openly and in their own words. Probing statements/questions will be used throughout to keep the interview on track, and delve further into grey areas, or matters of interest. I will offer participants the choice to respond to questions in a face-to-face interview in person or via an online platform, equally, they can answer in writing instead, to make this research as inclusive as possible considering individual needs and reasonable adjustments (Equality Act 2010).
Analysis
An Experiential Thematic Analysis methodology (Clarke & Braun, 2013), will act as a means of gaining the lived experiences of parents. A semi-structured interview will allow their personal views space to be heard and documented; ultimately enabling me to identify any patterns that arise in the data. I am approaching this study with the view that there may be intersectional factors at play, and I am keen to identify these if they are present. Transcriptions will be taken from audio recordings along with notes from the interview if one has taken place. The study will follow the 6 steps of Thematic Analysis (Clarke & Braun, 2013) and will look to identify patterns and themes within the data. When experiential patterns arise, these may be looked at through an intersectional lens as a means of ascertaining if there are any similar ‘crossroads’ in the participant’s stories (Crenshaw, 1991).
REFLEXIVE ANALYSIS
Subject position
For transparency and respect to the participants, it will be shared that I have personal experience of Autism and FII. In some cases, they may already be aware due to the media coverage that this researcher has previously received. As an outspoken member of the Autism Community, I was responsible for the 2017 Art Exhibition ‘Accused, an autism mother’, which highlighted a need for better understanding of different symptomatic presentations of Autism. Rather than hinder or bias the process, it is felt that this will benefit the participants and the ability to gather data will be enhanced as they might be comforted by a shared understanding and confident they will not encounter any judgement.
Philosophical Position
As a researcher with Autism Spectrum Condition myself and having children who are diagnosed Autistic, I feel my epistemological stance must be that of a critical realist, I have to accept that there is a version of a ‘truth’ that exists within our physical and neurological make-up, one that is in some way definable, and diagnosable and real, as it impacts on our daily lives. However, for me, current thinking is so confined by the societal, patriarchal, and historical structures based around disability, autism and parenting, that these are unavoidably dominate research in the area. To get a handle on these two seemingly conflicting concepts, I have chosen a phenomenological stance and will explore people’s direct experiences to gain information through the eyes of other’s lived experiences, how they exist within the current world specifically in relation to Autism and FII.
Ethics
This is a sensitive area. The RQ is specifically relates to parents of autistic children. This could mean that participants may be on the spectrum themselves, diagnosed or not (Gerdts et al., 2013). There may be issues relating to unresolved mental health traumas as a result of the experiences that are being explored in the RQ. Although delicate, this is a key part of the questioning and will feed very much into the data. The advert will specifically state the nature of the study and that we are unable to accept participants with an open Child Protection case or cases where children have been permanently removed from parents.
This project will adhere to the British Psychological Society’s ‘Code of Ethics and Conduct 2018,’ and the University of Gloucestershire’s ‘Research Ethics: A Handbook of Principles and Procedures, 2021’. Participants will be given information sheets, including Privacy Notice/Data Protection, Health & wellbeing Support resources and academic contact details. Informed consent will be sought and a right to withdraw will be given. All data will be anonymised; however, participants will be aware that due to the individual nature of the data, that full anonymity and confidentiality cannot be guaranteed, however, all audio recordings will be deleted after transcription.
Additional note: the term Autism Spectrum Condition (ASC) is increasingly used by the Autism Community as it is considered less stigmatising (Hull et al., 2017). However, for the purposes of this Study, ASD (as named in the DMS-5) will be used to avoid confusion and to remain in keeping with the diagnostic manual (American Psychiatric Association, 2013) (unless ASC is quoted directly from another source).
References
A. L. Pohl, S. K. Crockford, C. Allison and S. Baron-Cohen, Autism Research Centre, University of Cambridge, Cambridge, U. K. (2016). Positive and Negative Experiences of Mothers with Autism.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders : DSM-5. (5th ed.). American Psychiatric Association. http://0-dsm.psychiatryonline.org.www.consuls.org/
Baron-Cohen, S., Lombardo, M. V, Auyeung, B., Ashwin, E., Chakrabarti, B., & Knickmeyer, R. (2011). Why Are Autism Spectrum Conditions More Prevalent in Males? In PLoS Biology (Vol. 6). https://doi.org/10.1371/journal.pbio.1001081
Bass, C., & Glaser, D. (2014). Early recognition and management of fabricated or induced illness in children. The Lancet, 383(9926), 1412–1421. https://doi.org/https://doi.org/10.1016/S0140-6736(13)62183-2
Clarke, V., & Braun, V. (2013). Successful Qualitative Research: A Practical Guide for Beginners.
Crenshaw, K. (1991). Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review TA – TT –, 43(6), 1241.
Gerdts, J., Bernier, R., Dawson, G., & Estes, A. (2013). The broader autism phenotype in simplex and multiplex families. Journal of Autism and Developmental Disorders, 43(7), 1597–1605. https://doi.org/10.1007/s10803-012-1706-6
Gullon-scott, F. J., & Bass, C. (2018). Munchausen by proxy: Under- recognition of autism in women investigated for fabricated or induced illness. GAP,19,2, 2018, 19(2), 6–11.
Hull, L., KV, P., Allison, C., Smith, P., Baron-Cohen, S., MC, L., & Mandy, W. (2017). “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions. Journal of Autism and Developmental Disorders, 47(8), 2519–2534. https://doi.org/10.1007/s10803-017-3166-5 Langdridge, D. (2008). Phenomenology and Critical Social Psychology: Directions and Debates in Theory and Research. Social and Personality Psychology Compass TA – TT –, 2(3), 1126–1142. https://doi.org/10.1111/j.1751-9004.2008.00114.x
Parker, I. (1999). Against relativism in psychology, on balance. History of the Human Sciences TA – TT –, 12(4), 61–78.
RCPCH. (2021). Perplexing Presentations / Fabricated or Induced Illness in Children RCHPC guidance.
Willig, C. 1964. (2008). Introducing qualitative research in psychology : adventures in theory and method (2nd ed. NV). McGraw Hill/Open University Press. http://www.dawsonera.com/depp/reader/protected/external/AbstractView/S9780335236343