The educational experiences of autistic children with and without extreme demand avoidance behaviours

References

• American Psychiatric Association. 2013. Diagnostic and Statistical Manual of Mental Disorders 5th ed. (DSM-5), Washington, DC: American Psychiatric Association Publishing.
   Google Scholar
• Ashburner, J., J. Ziviani, and S. Rodger. 2010. “Surviving in the Mainstream: Capacity of Children with Autism Spectrum Disorders to Perform Academically and Regulate Their Emotions and Behavior at School.” Research in Autism Spectrum Disorders 4 (1): 18–27. doi:10.1016/j.rasd.2009.07.002.
   Web of Science ®Google Scholar
• Atkinson, M. 2013. Always Someone Else’s Problem: Office of the Children’s Commissioner’s Report on Illegal Exclusions. London: Office of the Children’s Commissioner for England.
   Google Scholar
• Bishop, M., and E. M. Boag. 2006. “ Teachers’ Knowledge About Epilepsy and Attitudes Toward Students with Epilepsy: Results of a National Survey.” Epilepsy & Behaviour 8 (2): 397–405.
   PubMed Web of Science ®Google Scholar
• Braun, V., and V. Clarke. 2006. “Using Thematic Analysis in Psychology.” Qualitative Research in Psychology 3 (2): 77–101. doi:10.1191/1478088706qp063oa.
   Google Scholar
• Brede, J., A. Remmington, L. Kenny, K. Warren, and E. Pellicano. 2017. “Excluded from School: Autistic Students’ Experiences of School Exclusion and Subsequent Re-Intergration Into School.” Autism and Developmental Language Impairments 2: 1–20. doi:10.1177/2396941517737511.
   Google Scholar
• Bruni, T. 2014. “Test Review: Social Responsiveness Scale–Second Edition (SRS-2).” Journal of Psychoeducational Assessment 32: 365–369. doi:10.1177/0734282913517525.
   Web of Science ®Google Scholar
• Cage, E., J. Di Monaco, and V. Newell. 2018. “Experiences of Autism Acceptance and Mental Health in Autistic Adults.” Journal of Autism and Developmental Disorders 48: 473–484. doi:10.1007/s10803-017-3342-7.
   PubMed Web of Science ®Google Scholar
• Charman, T., L. Pellicano, L. V. Peacey, N. Peacey, K. Forward, and J. Dockrell. 2011. What is Good Practice in Autism Education? London: Autism Education Trust.
   Google Scholar
• Christie, P. 2007. “The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for Good Practice.” Good Autism Practice Journal 8 (1): 3–11.
   Google Scholar
• Christie, P., M. Duncan, R. Fidler, and Z. Healy. 2012. Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals. London: Jessica Kingsley Publishers.
   Google Scholar
• Constantino, J. N., and C. P. Gruber. 2012. Social Responsiveness Scale. 2nd ed. Los Angeles, CA: Western Psychological Services.
   Google Scholar
• Cook, A., J. Ogden, and N. Winstone. 2017. “Friendship Motivations, Challenges and the Role of Masking for Girls with Autism in Contrasting School Settings.” European Journal of Special Needs Education 33 (3): 302–315. doi:10.1080/08856257.2017.1312797.
   Web of Science ®Google Scholar
• Courcy, I., and C. des Rivières. 2017. ““from Cause to Cure”: A Qualitative Study on Contemporary Forms of Mother Blaming Experienced by Mothers of Young Children with Autism Spectrum Disorder.” Journal of Family Social Work 20 (3): 233–250. doi:10.1080/10522158.2017.1292184.
   Web of Science ®Google Scholar
• Cridland, E. K., S. C. Jones, P. Caputi, and C. Magee. 2014. “Being a Girl in a Boys’ World: Investigating the Experiences of Girls with Autism Spectrum Disorders During Adolescence.” Journal of Autism and Developmental Disorders 44: 1261–1274. doi:10.1007/s10803-013-1985-6.
   PubMed Web of Science ®Google Scholar
• Department for Education. 2012. Exclusion from Maintained Schools, Academies and Pupil Referral Units in England: A Guide for Those with Legal Responsibilities in Relation to Exclusion. London: Department for Education.
   Google Scholar
• Department for Education. 2015. Permanent and Fixed Period Exclusions in England: 2013 to 2014. London: Department for Education.
   Google Scholar
• Fidler and Christie. 2019. Collaborative Approaches to Learning for Pupils with PDA: Strategies for Education Professionals. London: Jessica Kingsley Publishers.
   Google Scholar
• Fried, L., R. Vithiatharan, E. Davis, T. Jones, K. Hancock, K. Runions, D. Cross, etal. 2018. “The school experiences of children and adolescents with type 1 diabetes in Western Australia.” Issues in Educational Research 28 (3): 578–595.
   Web of Science ®Google Scholar
• Gill, K., H. Quilter-Pinner, and D. Swift. 2017. Making the Difference: Breaking the Link Between School Exclusion And Social Exclusion. London: Institute for Public Policy Research.
   Google Scholar
• Gillberg, C., I. C. Gillberg, L. Thompson, R. Biskupsto, and E. Billstedt. 2015. “Extreme (“Pathological”) Demand Avoidance in Autism: a General Population Study in the Faroe Islands.” European Child and Adolescent Psychiatry 24: 979–984. doi:10.1007/s00787-014-0647-3.
   PubMed Web of Science ®Google Scholar
• Goodman, R. 1997. “The Strengths and Difficulties Questionnaire: A Research Note.” Journal of Child Psychology and Psychiatry 38: 581–586.
   PubMed Web of Science ®Google Scholar
• Gordon, K., M. Murin, O. Baykaner, L. Roughan, V. Livermore-Hardy, D. Skuse, and W. Mandy. 2015. “A Randomised Controlled Trial of PEGASUS, a Psychoeducational Programme for Young People with High-Functioning Autism Spectrum Disorder.” Journal of Child Psychology and Psychiatry 56: 468–476. doi:10.1111/jcpp.12304.
   PubMed Web of Science ®Google Scholar
• Gore Langton, E., and N. Frederickson. 2016. “Mapping the Educational Experiences of Children with Pathological Demand Avoidance.” Journal of Research in Special Educational Needs 16 (4): 254–263. doi:10.1111/1471-3802.12081.
   Web of Science ®Google Scholar
• Gore Langton, E., and N. Frederickson. 2018. “Parents’ Experiences of Professionals’ Involvement for Children with Extreme Demand Avoidance.” International Journal of Developmental Disabilities 64 (1): 16–24. doi:10.1080/20473869.2016.1204743.
   Web of Science ®Google Scholar
• Green, J. 2020. “Commentary: Anxiety and Behaviour in and Beyond ASD; Does the Idea of ‘PDA’ Really Help? – a Commentary on Stuart et al. (2020).” Child and Adolescent Mental Health 25: 74–76. doi:10.1111/camh.12379.
   PubMed Web of Science ®Google Scholar
• Green, J., M. Absoud, V. Grahame, O. Malik, E. Simonoff, A. Le Couteur, and G. Baird. 2018. “Pathological Demand Avoidance: Symptoms But Not A Syndrome.” The Lancet: Child and Adolescent Health 2 (6): 455–464. doi:10.1016/S2352-4642(18)30044-0.
   PubMedGoogle Scholar
• Green, H., A. McGinnity, H. Meltzer, T. Ford, and R. Goodman. 2005. Mental Health of Children and Young People in Great Britain. Hampshire: Palgrave Macmillan.
   Google Scholar
• Hull, L., M.-C. Lai, S. Baron-Cohen, et al. 2020. “ Gender Differences in Self-Reported Camouflaging in Autistic and non-Autistic Adults.” Autism 24 (2): 352–363. doi:10.1177/1362361319864804.
   PubMed Web of Science ®Google Scholar
• Hull, L., K. V. Petrides, C. Allison, P. Smith, S. Baron-Cohen, M. C. Lai, and W. Mandy. 2017. ““Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions.” Journal of Autism and Developmental Disorders 47: 2519–2534. doi:10.1007/s10803-017-3166-5.
   PubMed Web of Science ®Google Scholar
• Humphrey, N.2015. Autism and Education Volume One: Key Perspectives and Themes in Autism Education. London: Sage.
   Google Scholar
• Humphrey, N., and W. Symes. 2010. “Perceptions of Social Support and Experience of Bullying among Pupils with Autistic Spectrum Disorders in Mainstream Secondary Schools.” European Journal of Special Needs Education 25 (1): 77–91. doi:10.1080/08856250903450855.
   Google Scholar
• Kos, j. M., A. L. Richdale, and D. A. Hay. 2006. “Children with Attention Deficit Hyperactivity Disorder and Their Teachers: A Review of the Literature.” International Journal of Disability, Development and Education 53 (2): 147–160. doi:10.1080/10349120600716125.
   Google Scholar
• Lai, M.-C., M. V. Lombardo, A. N. Ruigrok, B. Chakrabarti, B. Auyeung, P. Szatmari, F. Happé, and S. Baron-Cohen. 2017. “Quantifying and Exploring Camouflaging in Men and Women with Autism.” Autism 21 (6): 690–702. doi:10.1177/1362361316671012.
   PubMed Web of Science ®Google Scholar
• Langan, M. 2011. “Parental Voices and Controversies in Autism.” Disability & Society 26 (2): 193–205. doi:10.1080/09687599.2011.544059.
   Web of Science ®Google Scholar
• Linden, M. A., H.-J. Braiden, and S. Miller. 2013. “Educational Professionals’ Understanding of Childhood Traumatic Brain Injury.” Brain Injury 27 (1): 92–102. doi:10.3109/02699052.2012.722262.
   PubMed Web of Science ®Google Scholar
• Malik, O., and G. Baird. 2018. “Commentary: PDA - What's in a Name? Dimensions of Difficulty in Children Reported to Have an ASD and Features of Extreme/Pathological Demand Avoidance: a Commentary on O'Nions et al. (2017).” Child and Adolescent Mental Health 23: 387–388. doi:10.1111/camh.12273.
   PubMed Web of Science ®Google Scholar
• Mayring, P. 2015. “Qualitative Content Analysis: Theoretical Background and Procedures.” In Approaches to Qualitative Research in Mathematics Education. Advances in Mathematics Education, edited by A. Bikner-Ahsbahs, C. Knipping, and N. Presmeg, 365–380. Dordrecht: Springer.
   Google Scholar
• Mccluskey, Gillean, Sheila Riddell, Elisabet Weedon, and Mariela Fordyce. 2015. “Exclusion from School and Recognition of Difference.” Discourse: Studies in the Cultural Politics of Education 37: 1–11. doi:10.1080/01596306.2015.1073015.
   Web of Science ®Google Scholar
• Milton, D. 2013. ‘Nature’s Answer to Over-Conformity’: Deconstructing Pathological Demand Avoidance, Autism Experts Online. Accessed 05.05.20. https://kar.kent.ac.uk/62694/.
   Google Scholar
• Moore, A. 2020. “Pathological Demand Avoidance: What and Who Are Being Pathologised and in Whose Interests?” Global Studies of Childhood 10 (1): 39–52. doi:10.1177/2043610619890070.
   Google Scholar
• Moyse, R., and J. Porter. 2015. “ The Experience of the Hidden Curriculum for Autistic Girls at Mainstream Primary Schools.” European Journal of Special Needs Education 30 (2): 187–201. doi:10.1080/08856257.2014.986915.
   Web of Science ®Google Scholar
• Neely-Barnes, S. L., H. R. Hall, R. J. Roberts, and J. C. Graff. 2011. “Parenting a Child With an Autism Spectrum Disorder: Public Perceptions and Parental Conceptualizations.” Journal of Family Social Work 14 (3): 208–225. doi:10.1080/10522158.2011.571539.
   Google Scholar
• Nelson, A. T., C. Lopata, M. A. Volker, M. L. Thomeer, J. A. Toomey, and E. Dua. 2016. “Exploratory Factor Analysis of SRS-2 Teacher Ratings for Youth with ASD.” Journal of Autism and Developmental Disorders 46: 2905–2915. doi:10.1007/s10803-016-2822-5.
   PubMed Web of Science ®Google Scholar
• Newson, E., and K. Le Marechal. 1998. Pathological Demand Avoidance Syndrome, presented at Durham Conference Psychobiology of Autism: current research and practice. Accessed 04.05.20. https://www.autismeastmidlands.org.uk/wp-content/uploads/2016/10/PDA-discriminant-functions-analysis.pdf.
   Google Scholar
• Newson, E., Kate Le Marechal, and C. David. 2003. “Pathological Demand Avoidance Syndrome: A Necessary Distinction Within the Pervasive Developmental Disorders.” Archives of Disease in Childhood 88: 595–600. doi:10.1136/adc.88.7.595.
   PubMed Web of Science ®Google Scholar
• NICE. 2018. Learning disabilities and behaviour that challenges: service design and delivery: NICE guideline NG93, London: National Institute for Health and Care Excellence (NICE).
   Google Scholar
• O’Nions, E., P. Christie, J. Gould, E. Viding, and F. Happe. 2014. “Development of the ‘Extreme Demand Avoidance Questionnaire’ (EDA-Q): Preliminary Observations on a Trait Measure for Pathological Demand Avoidance.” Journal of Child Psychology and Psychiatry 55 (7): 758–768. doi:10.1111/jcpp.12149.
   PubMed Web of Science ®Google Scholar
• Ozsivadjian, A. 2020. “Editorial: Demand Avoidance — Pathological, Extreme or Oppositional?” Child and Adolescent Mental Health 25: 57–58. doi:10.1111/camh.12388.
   PubMed Web of Science ®Google Scholar
• PDA Society. 2018. Being Misunderstood: Experiences of the Pathological Demand Avoidance Profile of ASD. Accessed 05.05.20. https://www.pdasociety.org.uk/resources/2018-summary/.
   Google Scholar
• PDA Society. n.d. Diagnosing PDA available online at https://www.pdasociety.org.uk/what-is-pda-menu/diagnosing-pda/.
   Google Scholar
• Pirrie, A., G. Macleod, M. A. Cullen, and G. McCluskey. 2011. “What Happens to Pupils Permanently Excluded from Special Schools and Pupil Referral Units in England?” British Educational Research Journal 37: 519–538. doi:10.1080/01411926.2010.481724.
   Web of Science ®Google Scholar
• Rowley, E., S. Chandler, G. Baird, E. Simonoff, A. Pickles, T. Loucas, and T. Charman. 2012. “The Experience of Friendship, Vicitimization and Bullying in Children with an Autism Spectrum Disorder: Associations with Child Characteristics and School Placement.” Research in Autism Spectrum Disorders 6 (3): 1126–1134. doi:10.1016/j.rasd.2012.03.004.
   Web of Science ®Google Scholar
• Sherwin, J. 2015. Pathological Demand Avoidance Syndrome: My Daughter Is Not Naughty. London: Jessica Kingsley Publishers.
   Google Scholar
• Silverman, C., and J. P. Brosco. 2007. “Understanding Autism: Parents and Pediatricians in Historical Perspective.” Archives of Pediatrics and Adolescent Medicine 161 (4): 392–398. doi:10.1001/archpedi.161.4.392.
   PubMedGoogle Scholar
• Simonoff, E., C. R. G. Jones, and G. Baird. 2013. “The Persistence and Stability of Psychiatric Problems in Adolescents with Autism Spectrum Disorders.” Journal of Child Psychology and Psychiatry 54 (2): 186–194. doi:10.1111/j.1469-7610.2012.02606.x.
   PubMed Web of Science ®Google Scholar
• Sproston, K., F. Sedgewick, and L. Crane. 2017. “ Autistic Girls and School Exclusion: Perspectives of Students and Their Parents.” Autism & Developmental Language Impairments 2), doi:10.1177/2396941517706172.
   Google Scholar
• Stuart, L., V. Grahame, E. Honey, and M. Freeston. 2020. “Intolerance of Uncertainty and Anxiety as Explanatory Frameworks for Extreme Demand Avoidance in Children and Adolescents.” Child and Adolescent Mental Health 25: 59–67. doi:10.1111/camh.12336.
   PubMed Web of Science ®Google Scholar
• Waltz, M. M. 2015. “Mothers and Autism: The Evolution of a Discourse of Blame.” AMA Journal of Ethics 17 (4): 353–358. doi:10.1001/journalofethics.2015.17.4.mhst1-1504.
   PubMedGoogle Scholar
• Watling, R. 2004. “Helping Them Out.” Emotional and Behavioural Difficulties 9 (1): 8–27. doi:10.1177/1363275204038258.
   Google Scholar
• Wolff, S. 2004. “The History of Autism.” European Child & Adolescent Psychiatry 13 (4): 201–208. doi:10.1007/s00787-004-0363-5.
   PubMed Web of Science ®Google Scholar
• Woods, R. 2017. “Pathological Demand Avoidance: My Thoughts on Looping Effects and Commodification of Autism.” Disability and Society 32 (5): 753–758. doi:10.1080/09687599.2017.1308705.
   Web of Science ®Google Scholar
• Woods, R. 2019. “ Demand Avoidance Phenomena: Circularity, Integrity and Validity – a Commentary on the 2018 National Autistic Society PDA Conference.” Good Autism Practice 20 (2): 28–40.
   Google Scholar
• Woods, R. 2020. “Commentary: Demand Avoidance Phenomena, A Manifold Issue? Intolerance of Uncertainty and Anxiety as Explanatory Frameworks for Extreme Demand Avoidance in Children and Adolescents – a Commentary on Stuart et al. (2019).” Child and Adolescent Mental Health. 68–70.
   PubMed Web of Science ®Google Scholar
• World Health Organisation. 2018. ICD-11 International Classification of Diseases for Mortality and Morbidity Statistics Eleventh Revision. Geneva: World Health Organisation.
   Google Scholar