Exploring the identities of adults diagnosed with Fetal Alcohol Spectrum Disorders


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 secondary disabilities 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. 

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

Project aims

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. 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

Project team:

The project team includes Dr. Carolyn Blackburn, Senior Research Fellow and Dr. Barbara Howard-Hunt, Senior Lecturer/Researcher from the Faculty of Health, Education and Life Sciences, Birmingham City University.


The project has received seed funding from Birmingham City University


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.


Interprofessional reflections on premature birth

Each year in England, around 10,000 children are born very preterm (at less than 32 weeks gestation) and a further 60,000 are born moderately preterm (at 32-36 weeks gestation). The number of preterm births has increased in the last two decades, and more preterm children are surviving due to improved neonatal care (National Neonatal Audit Programme, 2015). This raises the question of how well-equipped the childhood and education workforce is to support young children and families.

On Friday 14th July 2017, Birmingham City University hosted the first Interdisciplinary conference on Premature Birth.  The event included speakers from education and health, parents and from an international interprofessional early intervention centre.  This post is a reflective account of the event.


The first speaker of the day Professor Barry Carpenter discussed prematurity in the context of Complex Learning Difficulties and Disabilities from an international research project. Barry encouraged delegates to think about the way that children born prematurely learn and to rethink pedagogical approaches for children born prematurely in education, across the lifespan. He discussed the engagement approach adopted by the CLDD project.


Following this Dr. Merryl Harvey discussed findings from a study that explored parents perceptions of having a child born prematurely and stressed the most challenging times for parents were when the baby was being cared for in the NNU and during the first few months after taking the baby home. These challenges were intensified for some parents by having twins or triplets, being first-time parents or experiencing bereavement.


Two parents (Jo Bussey and Kelvin Dawson) talked about their experiences. Parent’s experiences focused on the shock of having a child born prematurely and coping with disability subsequently for one parent.




Rachel Jarmey from BLISS charity outlined the services that they offer to parents in terms of information, support and referral https://www.bliss.org.uk/

Alexendra Connolly and Rachel Evans (speech and language therapists) discussed the need for sensitive, child-led feeding to avoid children becoming stressed or anxious about feeding / food choices.

Dr Susan Foster-Cohen discussed the long term effects of premature birth on children and families as well as the Champion Centre assessment and monitoring programme for children born prematurely in New Zealand.  Following this Dr. Carolyn Blackburn discussed the implications of premature birth for early years practice from her study with parents in England, who described their experiences as ‘a different kind of normal’ highlighting the need to normalise premature birth.


There were also poster presentations from PhD students at BCU on parenting multiples and Kangaroo care.

On reflection it appears that children born prematurely need ongoing assessment and monitoring to ensure that any problems with development are identified early but also to reassure parents.  Not all children born prematurely will have difficulties with development but where they do, they may not be evident until they start school.  Parents might need counselling and support for psychological trauma.  The parent-child relationship and parent-parent relationship might need extra support. Children might need extra support settling into new settings and for transitions.

Slides from the event can be found here http://www.bcu.ac.uk/research/stories/born-early and there is also a Nursery World Article that might be interesting http://www.nurseryworld.co.uk/nursery-world/news/1161600/parents-experience-lack-of-support-for-premature-children

Delegates have described the event as “the highlight of our training year” and particularly liked the interdisciplinary focus of the event:

“It was so useful to have a multidisciplinary day, including parents, health and education, so that we can all work together consistently around the child and family. It gave us the opportunity also to network during breaks and talk to people from other disciplines who we would not usually encounter.”

Please contact Carolyn on carolyn.blackburn@bcu.ac.uk if you have any queries or would like training to support children born prematurely.






Promoting children’s well-being, right to make choices and engage in playful activities in restricted environments through music and singing

In an environment where children can experience loss of control over decisions and restricted play experiences, musical games and activities offer children affordances to improve these experiences.  They also support areas of personal, socio-emotional and communication development, turn taking and overall wellbeing.  Singing in particular is noted as a universal human activity (Powell and Gouch, 215) and a conduit for emotional exchange (Elkind 2015; Spratt 2012).


Photo: courtesy of The Champion Centre, NZ

The Singing Medicine delivered by Ex Cathedra http://excathedra.co.uk/education/singing-medicine/ service is an award-winning project (Outstanding contribution to the field of arts and health, Royal Society for Public Health 2011) that is delivered weekly to wards at Birmingham Children’s Hospital. The Hospital has an on-site school which works within the framework of the Early Years Foundation Stage (and other legislative curriculum frameworks) and where the programme is offered to children who are well enough to attend school. The Singing Medicine service brings all the benefits of play through singing to children staying in hospital.  In an environment where children can feel they have lost control over their lives adapted games offer children ways of making decisions.  The games also support many other areas of personal and social development important in any child’s development such language and speech development, turn-taking, taking an individual responsibility, learning to lose, confidence. The programme aims to respond to children’s emotions providing either stimulation, or offer calm as required.  On the Neonatal wards, Vocal Tutors (VTs) are often asked to sing to particularly distraught and crying babies in order to soothe them – sometimes even singing them to sleep.

The deeper breathing required by singing enables participants to reconnect with core muscles, and helps increase lung capacity.  Singing activities often include some movement to increase physical mobility, and VTs are often approached by physiotherapists to work with a patient in a particular way in order to increase the development of particular muscles in conjunction with exercises they have set.  Working in patient or family groups singing sessions relieve boredom, offer a distraction from the ward around them, and reduce social isolation. Singing with others promotes human bonding and oxytocin, supporting children’s relationships with caregivers. This in turn can lead to an increase in wellbeing in a situation where psychological deterioration can lead to deterioration in health.

This study is funded by the Froebel Trust and aims to describe and analyse the views and perceptions of parents and professionals who care for and support children who participate in the Singing Medicine service. A further aim would be to understand how the application of Frobelian principles can help us to understand and conceptualise children’s rights and well-being in the context of their family and community in restricted environments such as a Children’s Hospital.

Interviews with parents and clinical professionals will be followed by a Focus Group Meeting of Vocal Tutors to map the findings against Frobelian Principles of children’s right to play and creativity in restricted environments.






Bio-psycho-social consequences of premature birth

IMG_0205International Guest Lecture: Dr. Susan Foster-Cohen

Bio-psycho-social consequences of premature birth: family and professional partnerships in early intervention

The short, medium and long-term impacts of premature birth on the infant, the mother, the family and their educational and social communities are the active subjects of research in a number of academic fields.  Such research is revealing trends and likelihoods of developmental, educational, mental health and social consequences of prematurity that can, and must, be addressed in early intervention. Particularly difficult, however, is predicting which children will have which, or any, lasting consequences of their prematurity. This presents a challenge for health, education and social welfare practitioners to translate the research evidence into the best support for each child, the families that raise them, and the teachers that educate them.

Susan gave a lecture  to the Rethinking Childhood and Family Health research clusters.  She reviewed the bio-psycho-social consequences of premature birth and then describedthe multi-disciplinary support provided to children born prematurely, their families and their teachers at The Champion Centre in Christchurch, New Zealand.  She focused on the challenges encountered in assessment, monitoring, and intervention; and the importance of developing families as ‘advocates for life’ for their children.

Approximately 50 – 60 delegates attended her lecture from across the country and from diverse disciplines including collaborative partners from BLISS charity and Birmingham Children’s Hospital.  Positive feedback from delegates included comments such as:

“Thank you for organising this excellent event.  So much useful information for teaching and for my book. Also useful networking, I do hope that Barbara and I move our research idea forward. Thank you also for the delicious lunch.” (an HE Senior Lecturer in Early Childhood)

“Thank you for inviting us to the talk yesterday it was really fascinating. It was also fantastic to hear about the amazing programme Susan runs in New Zealand, I thought it really complemented some of the things Bliss believes in like having the family at the centre of the babies care.” (A charity Research Manager)

As a practising independent midwife, I found the event very illuminating. I will be using the knowledge gained (and revisited) in my work; especially in the postnatal period.

I focus on ‘growing and birthing healthy babies’. In this timely space, I place a large emphasis on supporting mothers (and their partners) to realise the critical importance of the antenatal period, enjoying good diet, exercise, and managing positive energies etc.

I look forward to the video and sharing this with my team. (a Mimosa Midwife)

What an excellent event, ands such a wonderful presentation I was like many in the audience bowled over and learnt such a lot.. Id be very happy to get involved in any future/potential research with BCU , around this field (health practitioner from Birmingham Children’s Hospital)

Dr. Foster-Cohen said of her visit to the UK:

“A true highlight of my trip was my visit to Birmingham City University and the chance to present my research work in prematurity and the model of professional service delivery for premature infants at the Champion Centre.

I was very impressed with the wide range of professional backgrounds in the audience that attended the lecture and extend my thanks to Dr. Carolyn Blackburn, my host, for promoting the importance of the path that premature infants take from the prenatal stage through early childhood.  The questions at the lecture and the discussion afterwards over lunch made it clear that there is considerable intelligent interest in the needs of young children at BCU and a genuine contribution that I can make to the courses and training that it offers.

Dr. Blackburn’s visit to the Champion Centre on her Winston Churchill Travelling Fellowship last year has opened up significant opportunities for collaborative research between us and I look forward to building on this first exchange of visits in the future.”

Dr. Susan Foster-Cohen is the Director of the Champion Centre and Adjunct Associate Professor at the University of Canterbury. She is engaged in active research into the outcomes of parent-partnership interventions at the Centre. She has also been a member of a research team at the University of Canterbury exploring the long-term outcomes of prematurity, with a particular focus on communication and language development. She has held academic positions in universities in the UK, USA, France and New Zealand and has published widely on language development in both pure and applied journals and books. Susan joined us in a joint venture between the Rethinking Childhood Cluster and the Family Health Cluster on the 6th June to talk about:

Landmark conference on children’s rights and early intervention

Earlier in June, I was fortunate enough to attend ISEI’s conference on Children’s Rights and Early Intervention.  In this post, I reflect on the conference.


The International Society on Early Intervention holds a major conference very three to four years.  This years’ conference focused on the rights of all children to develop to their full potential and to participate without barriers in all aspects of society Encouraging and supporting the inclusion of children with developmental delays and disabilities in natural environments, including family settings, child care, and preschool programs, is at the core of maximizing children’s rights. Indeed, the concept of full participation is consistent with two United Nations treaties that address these rights: Convention on the Rights of the Child and Convention on the Rights of Persons with Disabilities. The conference was dedicated to Ulf Janson who dedicated, devoted much of his professional life to promoting the rights of young children with disabilities, understanding the nature of social inclusion, and advocating for the full inclusion of all children and their families and Franz Peterander, Ph.D. Professor, Ludwig-Maximilians University reminded us of his commitment to ECI.

IMG_0232Franz Peterander

In this conference, early intervention was proposed as a basic right of all vulnerable children, and was explored from many perspectives. Issues related to access, equity, quality, and accountability were considered to be paramount. Strengthening families, training professional personnel, promoting social-emotional development, conducting reliable, valid, and culturally appropriate assessments, exploring issues related to institutional care and deinstitutionalization, examining the impact, prevention, and treatment of trauma, abuse, and neglect, testing and evaluating new strategies and techniques to promote a child’s development to the fullest, and developing approaches to enhance social inclusion were among the topics included. The development and evaluation of policies in individual countries or regions within countries to ensure that early intervention is among the rights of young children provided an important context.

IMG_0223Mike Guralnick, Chair of ISEI

The conference opened with an inspirational and moving performance from Adolf Fredrik’s Music School Youth Chorus. Following this, there were opening addresses from Anders Gustavsson, Ph.D. Professor, Stockholm University, Astrid Söderbergh Widding, Ph.D, President, Stockholm University and Mike Guralnick. During his address Mike announced Barry Carpenter’s recent award of Commander of the Order of the British Empire in recognition to his service to the field of Special Education Needs.  Barry is an Independent Education Consultant from the UK and Carolyn has worked with Barry on research projects and publications.

The conference proceeded with plenary and parallel sessions focussed on a wide range of topics that were provided by and for 600 delegates from 55 countries. In addition delegates were invited to a wine and canapés at the Stockholm Town Hall where Nobel Peace Prizes are awarded.

Mike Guralnick, Chair of ISEI, described the conference as a landmark event in Early Intervention, stressing that there is currently a humanitarian crisis for vulnerable children. He explained that we need a systems based approach to services which must be coordinated within a team and work with parents.  There needs to be universal agreement that every child has a right to early intervention.

Professor Eva Björck Åkesson talked about an ecological transactional model and a biopsychosocial perspective which was focused on the preschool as an environment for participation, interaction, and development in the context of early intervention in Sweden. She explained that engagement and togetherness needs to be further researched and we need to be solution oriented, as there are many challenges to overcome in the field of early intervention.

IMG_0235Professor Akesson

Dr. Emily Baron Vargas talked about Building Sustainable National Systems for Early Childhood Intervention from her work at the RISE Institute that assists nations to develop strategic plans, systems, and programs for early childhood intervention (ECI) and hosts the Early Childhood Development (ECD) Task Force of the Global Partnership on Children with Disabilities.

Dr. Pia Rebello Britto (Global Chief and Senior Advisor, Early Childhood Development, UNICEF, New York) urged us to take Early Childhood Interventions into the sustainable development era.  She argued that all children need good nutrition, stimulation and safety and protection in order to thrive.  However, significant numbers of children around the world do not experience these basic human rights, which leads to unmet human potential.  It is the role of the early childhood intervention community to change this.  She challenged us to mobilise resources and raise the profile of this with policy makers.

IMG_0291Pia Britto talks about neuroscience and epigenetics


There were a series of Master Lectures provided by international speakers on a wide range of EI subjects.  A number of members of Eurlyaid attended and presented at the conference.

I chaired a session on Language and Communication and presented two parallel sessions on a) Young children’s use of private speech in early years settings from my PhD findings and b) Applying relational pedagogy and professional love to early childhood intervention services.


ISEI conference Stockholm university 2016
ISEI conference Stockholm university 2016

The full programme for the conference can be found here https://depts.washington.edu/isei/ISEI_Program.pdf.  The next conference will be held in Sydney in 2019.


Born early: early care and education for young children born prematurely


Born early:  early care and education experiences of young children born prematurely

 Dr. Carolyn Blackburn and Dr. Merryl Harvey (supported by BLISS http://www.bliss.org.uk/)

Each year in England, around 10,000 children are born very preterm (at less than 32 weeks gestation) and a further 60,000 are born moderately preterm (at 32-36 weeks gestation). The number of preterm births has increased in the last two decades, and more preterm children are surviving due to improved neonatal care (National Neonatal Audit Programme, 2015). However, the prevalence of cognitive, behavioural and emotional problems in preterm populations has not changed. In particular, children born preterm have been found to experience specific learning problems including difficulties with mathematics, visual-spatial skills, memory and attention.

There is still much we do not know about the nature and spectrum of these learning difficulties, their long term consequences, and how to deal with them. In particular, there is controversy about whether moderately preterm children experience similar but milder learning problems than children born very preterm. Teachers and educational psychologists receive little formal training about preterm birth and are often not aware of appropriate strategies to support preterm children in the classroom. Informing teachers about the special constellation of problems following preterm birth is crucial in preparing them to support the growing number of preterms entering schools in the coming years (Campbell, 2015; Carpenter et al., 2015).

Studies have explored parents’ experiences of having a child born prematurely. However, these studies have generally focused on the months immediately following the birth and have taken a health and social care perspective (Harvey el al, 2013; Garfield et al, 2014; Gray et al, 2013). Quantitative studies have also examined the development of children who were born prematurely and have identified the learning difficulties that they face during early childhood (Marlow, 2004; Johnson et al, 2010; Costeloe 2012). Parents’ experiences of early years education is an under-researched area.

The benefits of early care and education early intervention (EI) have been well documented in policy and research in terms of improving outcomes for children at risk of or identified with SEN. Whilst not all children born prematurely will be identified with Special Educational Needs, ongoing monitoring of their learning and development (as is evident from Carolyn’s work at the Champion Centre, NZ) has the potential to ameliorate any future delays or difficulties.

.This study aims to explore the early care and education experiences of children born prematurely through reports from parents in order to identify best practice in early care and education and provide advice and guidance for policy-makers and early educators. Research questions include:

  1. What are the early social experiences of young children born prematurely (as reported by parents)?
  1. What are parents’ memories of their children’s developmental milestones?
  1. Where children are attending early years settings, what are parents experiences of this, were there any difficulties/problems in finding suitable childcare provision?
  1. What advice/support do early years workers need to support children born prematurely and their families?

The first phase of the research will be a family survey.  More details to follow.


Campbell, D. Premature babies more likely to end up in lower- paid jobs. The Guardian 1st September 2015

Carpenter, B., Egerton, J. Cockbill, B., Brooks, C., Fotheringham, J., Rawson, H. And Thisthtlethwaite, J. Engaging learning with complex learning difficulties and disabilities. London: Routledge

Costeloe KL, Hennessy EM, Haider S, Stacey F, Marlow N, Draper ES. Short term outcomes after extreme preterm birth in England: comparison of two birth cohorts in 1995 and 2006 (the EPICure studies). BMJ, 2012;345:e7976

Garfield CF, Lee Y, Kim HN (2014) Paternal and maternal concerns for their very low-birth-weight infants transitioning from NICU to home. Journal of Perinatal and Neonatal Nursing; 28 4 305-312

Gray PH, Edwards DM, O’Callaghan MJ, Cuskelly M, Gibbons K. (2013) Parenting stress in mothers of very preterm infants – influence of development, temperament and maternal depression. Early Human Development; 89 9 6250629

Harvey, M.E. Nongena, P. Gonzalez-Cinca, N. Edwards, A.D. and Redshaw, M.E. (2013) Parents’ experiences of information and communication in the neonatal unit about brain imaging and neurological prognosis: a qualitative study, Acta Paediatrica, 102(4): 360-365.

Johnson S, Hollis C, Kochhar P, Hennessy EM, Wolke D, Marlow N. Autism spectrum disorders in extremely preterm children. J Pediatrics2010;156:525-31

Marlow N. Neurocognitive outcome after very preterm birth. Arch Dis Child Fetal Neonatal Ed 2004;89:F224-8

National Neonatal Audit Programme (2015) Annual Report on 2014 data. http://www.rcpch.ac.uk/improving-child-health/qualityimprovement-and-clinical-audit/national-neonatal-audit-programme-nnap (accessed 11/04/2016).

Award ceremony for WCMT Travelling Fellowship

Carolyn with Professor Brian Clarke©Clive Totman 2016

On Wednesday 18th May, I travelled to London with 128 other Fellows to receive my Winston Churchill Fellowship Medallion from Professor Brian Clarke at a prestigious biennial award ceremony.  The event was held at Church House near Westminster

new medallion

The Churchill Fellowship Medallion



Musicians played whilst Fellows registered

Church House has significant Churchillian associations as during the Blitz, Winston Churchill requisitioned Church House as a makeshift Houses of Parliament after the originals had been damaged by bombing. It was also from Church House that he made his famous speech announcing the sinking of the Bismarck on 24th May 1941. It was an ideal venue to hold the event.


The Agenda for the event included a talk from Brian about his own Fellowship following an introduction from the Chair of the Advisory Council, Anne Boyd and a presentation from the Chief Executive Julia Weston.  The Hon Jeremy Soames made the concluding remarks before Afternoon Tea was served for Fellows and guests.

The Travelling Fellowships provide opportunities for UK citizens to go abroad on a worthwhile project of their own choosing, with the aim of enriching their lives through their global experiences – and to bring back the benefit to others in their UK profession or community through sharing the results of their new knowledge.

Twenty two Fellows received awards in the Children and Young People category of which I was proud to be one of them.  It was inspiring to hear about Fellows travels across the Globe with projects ranging from child exploitation to mental health interventions to FGM and everything inbetween. My own Fellowship was about Relationship Based Early Intervention Services for Children with Complex Disabilities and I’m delighted to say that since returning to the UK, I’ve been elected as Board Member of Eurlyaid, had an article published in the International Journal of Birth and Parenting Education, presented my findings at EASPD’s conference in Moldova – entitled Growing Together in Early Childhood Intervention, had a paper accepted at BCU Wellbeing conference and been granted funding from BCU to explore Early Care and Education for Young Children Born Prematurely.

Professor Brian Clarke praised all the Fellows for their outstanding achievements, and said that “I know from personal experience that the Fellowship represents a wonderful opportunity. I am continually amazed and inspired by the Churchill Fellows dedication and commitment to making a difference in so many areas affecting today’s society.”