Exploring the identities of adults diagnosed with Fetal Alcohol Spectrum Disorders

Project team

Dr. Carolyn Blackburn, Senior Research Fellow, Faculty of Health, Education and Life Sciences

Dr. Barbara Howard-Hunt, Senior Lecturer/Researcher, Faculty of Health, Education and Life Sciences

Background

Fetal Alcohol Spectrum Disorders (FASD) are a range of resultant conditions of prenatal exposure to alcohol, and the leading non-genetic cause of disability in the Western world (British Medical Association, 2016). This means that unlike genetic conditions FASD is entirely preventable. There are 428 co-occurring conditions associated with FASD including Autism and Attention Deficit Hyperactivity Disorder. We do not have an accurate estimate of the prevalence of FASD in the UK (although emerging studies suggest a prevalence of 3 – 6 %). However, any estimate is likely to be an undercount due to diagnostic challenges related to a lack of professional expertise, a poor referral system, an absence of diagnostic services, and/or the stigma related to a diagnosis. Although diagnosis is accompanied by a degree of stigma for children and their families, the argument for diagnosis can be made on the following grounds:

• Diagnosis is important for children and young people as it gives them identity and enables them to understand their own difficulties in daily life;

• Diagnosis of the primary condition helps to reduce the likelihood of secondarydisabilities such as poor mental health;

• Diagnosis may lead to more accurately targeted and effective support as often children with FASD are either undiagnosed or diagnosed with an alternative condition such as Autism, Attention Deficit Hyperactivity Disorder (ADHD) or both of these. Whilst interventions targeted at alternative or co-existing conditions may be partially effective, if they do not work, educators will not have the neuroscientific understanding to adapt pedagogy based on a full and accurate diagnosis;

• Recent research shows that when children are diagnosed and parents educated about neurodevelopmental outcomes, they implement preventative strategies rather than punitive measure to manage difficult behaviour.  This improves family relationships;

• Diagnosis may lead to improved community and societal understanding of the condition;

• Diagnosis helps to raise awareness about the risks of PAE. Clearly in the longer term, this has the potential to reduce the number of children born with FASD.
  

Efforts to improve diagnosis and support for FASD have inadvertently stigmatized this life-long condition, marginalizing individuals, families and communities impacted by FASD, and leading to many forms of discrimination. The consequences of stigmatisation are the unfair treatment of people who use alcohol in pregnancy and people with FASD. Misunderstandings of the contributing factors to this disability further compound the problem. However, anecdotally, many adults with FASD and parents of children with FASD recognise diagnosis as a turning point in terms of understanding themselves/their child and a pathway to tolerance and empathy from others. The identity of adults diagnosed with FASD is an under-researched area and may help to further knowledge about the benefits / disadvantages to a diagnosis throughout life.

Project aims

This project aims to explore the identities of adults diagnosed with Fetal Alcohol Spectrum Disorders.

Research questions include:

1. What are the perceived benefits of a diagnosis of FASD across the lifespan?
2. What are the perceived disadvantages of a diagnosis of FASD across the lifespan?
3. What do adults with FASD want professionals to know about the role of a diagnosis in helping / preventing them to understand themselves and participate in society?

Methods and theoretical frameworks

Using ecological systems theory and additions frameworks: theories of stigma, intersectionality, human-social dignity and human rights a qualitative interpretive approach, to interviews with adults diagnosed with FASD will enable a thematic analysis.  These themes will be used to design an international online survey. The findings from these would be triangulated with a review of literature and policy analysis.

Funding

The project has received seed funding from Birmingham City University

Support

The project is supported by NOFAS-UK and The National FASD Advisory Committee, an adult steering group advising NOFAS-UK’s transitions to adulthood project. Dr. Raja Mukherjee Consultant Psychiatrist Surrey and Borders Partnership NHS Foundation Trust will act as an external advisor to the project.

This project aims to explore the identities of adults diagnosed with Fetal Alcohol Spectrum Disorders.