Autism diagnosis and education: does a label help?

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1 Autism diagnosis and education: does a label help? Dr Caroline Bond Manchester Institute of Education, University of Manchester, UK Caroline.Bond@manchester.ac.uk

2 What I will talk about this morning Diagnosis and educational provision Challenges for schools Research and practice in education An holistic approach Concluding thoughts

3 Diagnosis and educational provision International commitment to mainstream education for children and young people with SEND (Salamanca Statement) and in many countries a continuum of provision has been developed for children and young people on the autism spectrum (Falkmer, Anderson, Joosten, & Falkmer, 2015) The extent to which diagnosis determines educational resources/provision varies between countries (Bond, Symes, Hebron, Humphrey & Morewood, 2016) Sweden USA UK

4 Current UK context Revised Code of Practice for SEND (DfE and DoH, 2014) Shift from labels to meeting need Schools must: eliminate discrimination promote equality of opportunity foster good relations between disabled and non-disabled children and young people make reasonable adjustments Principles Participatory and collaborative decision making A clear local offer and collaboration between agencies Emphasis upon inclusive education and improving outcomes Teachers are responsible for outcomes of all pupils including those receiving additional support from others

5 Code of Practice and autism spectrum diagnosis 4 categories of need communication and interaction; cognition and learning; social, emotional and mental health and sensory/physical CYP on the autism spectrum may have needs across all areas Provision should be based on: understanding of strengths and needs; use well-evidenced interventions, targeted at areas of need; be family centred and reviewed

6 What I will talk about this morning Diagnosis and educational provision Challenges for schools Research and practice in education An holistic approach Concluding comments

7 Diverse individual needs of pupils with an autism spectrum label Co-occurring diagnoses Core Features Social interaction Social communication and interaction difficulties Communication Difficulties* Restrictive and repetitive behaviours, activities and interests magination Learning difficulties* Temperament * specifiers

8 Challenges in mainstream schools Staff understanding Peer group understanding Size and complexity of the environment Diversity of pupil group Staff expertise Resources time, flexibility, environmental adaptations External pressures

9 Reciprocal effects peer interaction model (REPIM ) proposed by Humphrey and Symes (2011 )

10 What I will talk about this morning Diagnosis and educational provision Challenges for schools Research and practice in education An holistic approach Concluding comments

11 ...right from the start, from the time someone came up with the word autism, the condition has been judged from the outside, by its appearances, and not from the inside according to how it is experienced. (Williams, 1996: 14).

12 What is happening in ASC research? Pie chart showing the breakdown of UK autism research grant funding between 2007 and 2011 (see Pellicano et al., 2013) Elizabeth Pellicano et al. Autism 2014; Copyright by The National Autistic Society, SAGE Publications

13 Figure 2. Participants priorities for future autism research in the UK: theme and sub-themes. Elizabeth Pellicano et al. Autism 2014; Copyright by The National Autistic Society, SAGE Publications

14 Evidence and autism education The field of autism research is strongly influenced by the scientific/medical model but controversial Has magnified debates about what works Sources systematic literature reviews (Bond et al. 2016; Wong et al, 2013); expert guides (Fleming et al., 2015); individual research studies; internet Only as good as the research that is available (Simpson, Mundschenk & Heflin, 2011)

15 What are the limitations of the autism intervention evidence? Focus has been on: 3-11 year age range (Wong et al., 2013) Lots of interventions but not necessarily autism specific EBP research often has a restricted focus (discrete interventions) and limited utility (Simpson et al., 2011) Perspectives and goals of CYP and families often not central (Kasari & Smith, 2013) Little research on what happens in schools - eclectic interventions; individualisation and implementation factors (Kasari & Smith, 2013) Relevant policy, guidance and training to bridge researchpractice is needed (Simpson et al., 2011)

16 Good practice studies What does good practice look like? Some common themes: Whole school approach Classroom approach Collaborative relationships (Bond & Hebron,2016b; Charman et al., 2011; Morewood, Humphrey & Symes, 2011)

17 A whole school approach To be effective, inclusive principles and practice need to permeate every aspect of school life;. the school needs to be saturated with autism understanding and awareness Morewood et al., 2011 Leadership Ethos Whole school Environment Training

18 Classroom approaches Yeah, I think like how the teacher portrays it the kids pick up so because the teachers understand, they know how to deal with him, so the kids deal with him the same - Parent Y1 pupil. Differentiation and adaptation Staff collaboration Classroom Targeted interventions Peer understanding

19 Building collaborative relationships Working with families They re very good. They re constantly keeping me in the loop. Parent Y11 child Collaborative working Knowing the pupil Professional collaboration

20 What do we know from research? Few interventions are autism specific Research has tended to focus on researchers priorities rather than those of people with autism and their families There is a lack of research into the complex task of providing support in schools Research on services has been limited (Pellicano et al. 2013) Good inclusive practice is crucial - a whole school approach; adaptations to classroom teaching and collaborative ethos

21 What I will talk about this morning Diagnosis and educational provision Challenges for schools Research and practice in education An holistic approach Concluding comments

22 We need ways of thinking which Put the child rather than the diagnosis at the centre labels in locked drawers (Hodge, 2016) Enable us to reflect critically upon how the child interacts with their environment Facilitate change in the systems around the child Facilitate collaboration and shared understanding

24 What I will talk about this morning Diagnosis and educational provision Challenges for schools Research and practice in education An holistic approach Concluding thoughts

25 Concluding thoughts Current context is challenging but likely to be most effective if we: View a label as a starting point Adopt a child centred; needs led focus Seek out opportunities for collaborative working with parents; across schools; across professions and agencies Facilitate collaborative working at a school level and across schools Oh it was great. He went on a rollercoaster, had a nosebleed and everything, but loved it! Absolutely loved it! He said it was the best day he s ever had, so it was great Class Teacher

26 References Bond, C., Symes, W., Hebron, J., Humphrey, N. & Morewood, G. (2016). Educating Persons with Autistic Spectrum Disorders- A Systematic Literature and Country Review. NCSE Research Reports No.20. Ireland: National Council for Special Education. Bond, C. & Hebron, J. (2016b). Developing mainstream resource provision for pupils with autism spectrum disorder: staff perceptions and satisfaction. European Journal of Special Needs Education, 31(2), Charman, T., Pellicano, L., & Peacey, L. V., Peacey, N., Forward, K. & Dockerell, J. (2011). What is Good Practice in Autism Education? Autism Education Trust. DfE and DoH. (2014). Special educational needs and disability code of practice: 0 to 25 years. Statutory guidance for organisations who work with and support children and young people with special educational needs and disabilities. London: DfE and DoH. Falkmer, M., Anderson, K., Joosten, A., & Falkmer, T. (2015). Parents Perspectives on Inclusive Schools for Children with Autism Spectrum Conditions International Journal of Disability, Development and Education, 62(1), Fleming, B., Hurley, A., & the Goth. (2015). Choosing Autism Interventions A Research-Based Guide. Pavilion Publishing and Media Ltd: Hove UK. Grandin, T. (1996). Emergence: Labeled Autistic, Warner Books. Hodge, N. (2016) Schools without labels. In Runswick-Cole, K., Mallett, R. & Timimi, S. (Eds.) Re-thinking autism: diagnosis, identity and equality. London: Jessica Kingsley. Humphrey, N., & Symes, W. (2011) Peer interaction patterns among adolescents with autistic spectrum disorders (ASDs) in mainstream school settings. Autism, Kasari, C., & Smith, T. (2013). Interventions in schools for children with autism spectrum disorder: Methods and recommendations. Autism : The International Journal of Research and Practice, 17(3), Morewood, G. D., Humphrey, N., & Symes, W. (2011). Mainstreaming autism : making it work. Good Autism Practice, 12(2): Pellicano, L., Dinsmore, A., & Charman, T. (2013). A future made together: shaping autism research in the UK. London: Institute of Education. Shea, V. (2004). A perspective on the research literature related to early intensive behavioral intervention (Lovaas) for young children with autism. Autism, 8(4) Simpson, R.L., Mundschenk, N.A. & Heflin, J.L Issues, Policies, and Recommendations for improving the Education of Learners with Autism Spectrum Disorders. Journal of Disability Policy Studies 22 (1): Wong, C., Odom, S.L., Hume, K., Cox, A.W., Fettig, A., Kucharczyk, S. and Schultz, T.R. (2013) Evidence-based practices for children, youth and young adults with autism spectrum disorder, Chapel Hill: The University of North Carolina, Frank Porter Graham Child Development Institute, Autism Evidence Base Practice Review Group.

Educational / social programs for children with ASD: good practice and inclusion

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