DASLNE Conference 23rd May 2012 Development of the BEFG-ASD - Supporting professionals and parents of children with ASD Noor Safiza Mohamad Nor PhD student /Paediatric Dietitian Institute of Health and Society Newcastle University DASLNE Conference 23rd May 2012 Institute for Public Health, National Institutes of Health Ministry of Health Malaysia

Why identify feeding problems and GI symptoms ? Problems may be similar to typically developing children but more frequent, persistent and longstanding in children with ASD Contribute to psychosocial and financial impact for children and families Management of these problems likely to be challenging Professionals in the community needs to identify and clarify these issues in a systematic way, to engage discussion with parents No structured questionnaire addressing both problems and the impact –for professionals in the community ( health and education settings)

An information pack was developed together with the BEFG-ASD Aims of research To develop a Brief structured questionnaire for the Early identification of Feeding problems and Gastrointestinal(GI) symptoms in children with Autism Spectrum Disorders, and the impact of these problems (BEFG-ASD) Interview based questionnaire for use by a range of professionals in the community An information pack was developed together with the BEFG-ASD

Methods FIELD TESTING OF BEFG-ASD Involvement of experts: Professionals Parents PHASE I 2009-2010 DEVELOPMENT OF BEFG-ASD Health professionals Teachers/Teaching assistants Community workers Parents PHASE II 2010-2011 FIELD TESTING OF BEFG-ASD PHASE III 2011-2012 Reliability and validity analyses Telephone interview with professionals EVALUATION OF BEFG-ASD

RESULTS SECTIONS AND QUESTIONS OF THE BEFG-ASD GI SYMPTOMS Abdominal pain (not associated with constipation) Diarrhoea Chronic constipation Toileting problems Frequent vomiting Weight issues (9 Questions) use of Bristol Stool Chart A FEEDING PROBLEMS Food selectivity Food sensitivity (physical food characteristics) Food sensitivity (child’s food environment) Problematic mealtime behaviours Food neophobia Signs of pica Parental dietary practices ( 25 Questions) C IMPACT Impact of feeding problems Impact of GI symptoms (parent’s life, stress, financial, family life) (8 questions) - details of impact

Feeding Problems (N=73) Types Questions % ‘food neophobia’ 82% child reluctant to eat new food 82% ‘food selectivity’ child refused to eat family food child insisted similar food at most meals child required specific food preparation >50% ‘food sensitivity’ (based on child’s food environment) child insists food served in particular way child has problems with cutlery control 50% (based on physical characteristics) insisted food on particular textures, flavours and smells >30% ‘signs of pica’ eat, lick or chew non-food items (stationaries, bus stops, baby wipes, papers, play dough, hair, furniture and tyres) ‘regular problematic mealtime behaviours’ (at least once a week). disruptive behaviours (shouting, spitting and throwing foods) aggressive behaviours (kicking siblings, throwing cutleries to family members and scratching tables) 62 % parents did not receive professional advice on feeding problems or child’s diet

Discussion and conclusion Questionnaire development : mixed qualitative and quantitative approach Commitment from professionals and parents was impressive Professionals : 48 Parents :74 BEFG-ASD can be used by a range of professionals in the community to support children with ASD and their families Multidisciplinary team approach in managing feeding problems

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