Missing and misdiagnosis on the autism spectrum: Potential consequences and implications for practice

Authors

  • Glenys Jones University of Birmingham

DOI:

https://doi.org/10.1921/swssr.v18i1.846

Abstract

he aim of this paper is to explore the current criteria for giving a diagnosis of autism, the potential benefits of diagnosis and the reasons why this may be missed or misdiagnosed and the possible consequences. It considers whether diagnosis is always necessary and if so, for whom and when. If diagnosis is made to inform intervention, does this happen and from whose perspective and what is the research evidence for current approaches in autism? As there is no definitive medical or genetic test for diagnosing autism, then it is always subjective and diagnostic rates will vary across services and within and between local authorities. The case is made that professionals need to develop ways to ensure that autistic individuals who would benefit from an autism diagnosis are identified so that their needs are met in a timely and appropriate way to prevent the development of mental health problems and to enable a good quality of life. Finally, focusing on the positive aspects of autism and enhancing the wellbeing of parents, carers and the staff in schools and settings should have positive outcomes for all.

Author Biography

Glenys Jones, University of Birmingham

Honorary Lecturer, Autism Centre for Education and Research

References

Aitken, K (2013) The autism spectrum: the changing context of diagnosis, research and practice, in G. Jones and T. McKay (Eds.), Good autism practice: The Scottish perspective. Kidderminster: BILD

American Psychiatric Association (2013) Diagnostic and Statistical Manual of Mental Disorders, 5th edition (DSM-V). Washington: APA

Attwood, T. (2006) Asperger’s and Girls. London: Future Horizons

Autism Education Trust (2014) Reaching out toolkit: A guide to access parents and families (available free to download from www.autismeducationtrust.org.uk)

Baird, G., Simonoff, E., Pickles, A., Chandler, S.,Loucas, T., Meldrum, D and Charman, T. (2006) Prevalence of disorders of the autistic spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet, 368, 210-215

Bogdashina, O. (2003). Sensory perceptual issues in autism and Asperger syndrome: Different sensory experiences, different perceptual worlds (2nd ed., 2004). London: Jessica Kingsley

Bondy, AS and Frost, LA (1994) The Picture Exchange Communication System. Focus on Autistic Behavior, 9, 3, 1-19

Bradley, E and Caldwell, P (2013) Mental health and autism: Promoting autism favourable environments (PAVE). Journal of Developmental Disabilities, 19, 1, 8–23

Courchesne, E., Saitoh, O., Townsend, J. and Yeung-Courchesne, R. (1994) Cerebellar hypoplasia and hyperplasia in infantile autism. Lancet, 343, 63-64

Cumine, V., Leach, J. and Stevenson, G. (1998) Asperger syndrome: A practical guide for teachers. London: David Fulton

Dawson, M (2007) The level and nature of autistic intelligence. Psychological Science, 18, 8, 657-662

Department for Education and Science (1978) The Warnock Report. London: HMSO

Elsabbagh, M., Bruno, R., Wan, M.W., Charman, T., Johnson, M.H., Green, J. and the BASIS Team (2014). Infant neural sensitivity to dynamic eye gaze relates to quality of parent-infant interaction at 7-months in infants at risk for autism. Journal of Autism and Developmental Disorders, doi 10.1007/s10803-014-2192-9

Feinstein, A. (2010) A history of autism: Conversations with the pioneers. Chichester: Wiley-Blackwell

Fleming, B., Hurley, E. and The Goth (2015) Choosing autism interventions: A research-based guide. Brighton: Pavilion Press

Gerland, G (2000) Finding out about Asperger syndrome, high-functioning autism and PDD. London: Jessica Kingsley

Gerland, G (2013) Secrets to success for professionals in the autism field. London: Jessica Kingsley

Ghaziuddin, M (2005) Mental health aspects of autism and Asperger syndrome. London: Jessica Kingsley Publishers

Grandin, T (2012) Different ... .not less: Inspiring stories of achievement and successful employment from adults with autism, Asperger’s and ADHD. Arlington,Texas: Future Horizons

Henninger, N A, and Taylor, J L (2013) Outcomes in adults with autism spectrum disorders: A historical perspective, Autism, 17, 1, 103–116

Holliday-Willey, L. (1999) Pretending to be normal: Living with Asperger’s syndrome. London: Jessica Kingsley

Honeybourne, V. (2015) Girls on the autism spectrum in the classroom: Hidden difficulties and how to help, Good Autism Practice Journal, 16,2,1-8

Howlin, P (1997) Preparing for adulthood. London: Routledge

Howlin, P (2000) Outcome in adult life for more able individuals with autism or Asperger syndrome, Autism, 4, 1, 63-83

Howlin, P and Moore, A (1997) Diagnosis in autism – a survey of 1200 patients, Autism, 1, 2, 135-62

Howlin, P., Alcock, J and Burkin, C (2005) An 8 year follow-up of a specialist supported employment service for high-ability adults with autism or Asperger syndrome, Autism, 9, 5, 533-549

Hurley, E. (2014) Ultraviolet voices: Stories of women on the autism spectrum. Birmingham: Autism West Midlands

Jackson, L (2002) Freaks, geeks and Asperger syndrome. London: Jessica Kingsley

Jones, G (2001) Giving the diagnosis to a young person with Asperger syndrome or high functioning autism, Good Autism Practice Journal, 2, 2, 65-74

Jones, G., English, A., Guldberg, K., Jordan, R., Richardson, P. and Waltz, M. (2008) Educational provision for children and young people with autism spectrum disorders living in England: a review of current practice, issues and challenges. London: Autism Education Trust. (available to download from www.autismeducationtrust.org.uk)

Jones, G., Baker, L., English, A. and Lyn-Cook, L. (2012) AET National Autism Standards for schools and educational settings. London: Autism Education Trust

Jones, G and Jordan, R. (2008) Research base for interventions in autism spectrum disorders, in E. McGregor, M. Núñez, K. Williams and J. Gómez (Eds.) An integrated view of autism. Oxford: Blackwell

Kaufman, B. (1994) Son-Rise: The miracle continues. California: H.J. Kramer

Klin A, Jones W, Schultz R, Volkmar F, and Cohen D (2002) Visual fixation patterns during viewing of naturalistic social situations as predictors of social competence in individuals with autism, Arch. Gen. Psychiatry, 59, 9, 809-16

Kossyvaki, L (2013) Adult interactive style and autism: reviewing the literature to inform school practice, Good Autism Practice Journal, 14, 2, 19-28

Kossyvaki, L, Jones, G and Guldberg, K (2012) The effect of adult interactive style on the spontaneous communication of young children with autism at school, British Journal of Special Education, 39, 4, 173-184

Lawson, W. (2008) Concepts of normality: The autistic and typical spectrum. London: Jessica Kingsley

Lawson, W. (2010) The passionate mind: How people with autism learn. London: Jessica Kingsley

Leonard, H.C., Bedford, R., Charman, T., Elsabbagh, M., Johnson, M.H., Hill, E.L. and the BASIS Team (2014). Motor development in children at risk of autism: A follow-up study of infant siblings, Autism, 18,3, 281-291

Lord, C et al. (2005) Challenges in evaluating psychosocial interventions for autistic spectrum disorders, Journal of Autism and Developmental Disorders, 35, 695-708

Lord, C and Jones, R M (2012) Annual research review: Re-thinking the classification of autism spectrum disorders Journal of Child Psychology and Psychiatry, 53, 490-509

Lovaas, O. (1987) Behavioural treatment and normal educational and intellectual functioning in young autistic children, Journal of Consulting and Clinical Psychology, 55, 3-9

McDonnell, A and Milton, DEM (2014) Going with the flow: reconsidering ‘repetitive behaviour’ through the concept of ‘flow states’. in G. Jones and E. Hurley (Eds.) Promoting happiness and wellbeing in autism, Birmingham: British Institute of Learning Difficulties

Milton, DEM (2014) , So what exactly are autism interventions intervening with? Good Autism Practice Journal, 15, 2, 6-14

Moran, H. (2006) A very personal assessment: using personal construct psychology assessment technique (drawing the ideal self) with young people with ASD to explore the child’s view of the self, Good Autism Practice Journal, 7, 2, 78-86

Murray, D (2006) (Ed.) Coming out Asperger’s: Diagnosis, disclosure and self confidence. London: Jessica Kingsley

Oliver, M. (1990) The politics of disability. London: Macmillan

Parsons, S., Guldberg, K., MacLeod, A., Jones, G, Balfe, P and Prunty, A (2009) International review of the literature of evidence of best practice provision in the education of persons with autistic spectrum disorders. Dublin: NCSE. Available at: www.ncse.ie

Prizant, B., Wetherby, A., Rubin, E., Laurent, A., and Rydell, P. (2006) The SCERTS Model: A comprehensive educational approach for children with autism spectrum disorders. Baltimore, MD: Paul H. Brookes Publishing

Rutter, M (2013) Changing concepts and findings on autism, Journal of Autism and Developmental Disorders, 43, 8, 1749-1757

Sainsbury, C. (2000) Martian in the playground: Understanding the schoolchild with Asperger’s syndrome. Bristol: Lucky Duck

Schopler, E. and Mesibov, GB (1995) Structured teaching in the TEACCH approach. in E. Schopler and G.B. Mesibov (Eds.) Learning and cognition in autism, New York: Plenum Press

Vermeulen, P (2014) The practice of promoting happiness in autism, in G. Jones and E. Hurley (Eds.) Promoting happiness and wellbeing in autism, Birmingham: British Institute of Learning Difficulties

Waltz, M. (2013) Autism: a social and medical history. London: Palgrave Macmillan

Williams, D. (1996) Autism: An inside-out approach. London: Jessica Kingsley

Williams, J. and Hanke, D. (2007) Do you know what sort of school I want? Optimum features of school provision for pupils with autistic spectrum disorder, Good Autism Practice Journal, 8, 2, 51-61

Wittemeyer, K., English, A., Jones, G., Lyn-Cook, L., and Milton, D. (2012) The Autism Education Trust Professional Competency Framework. London: Autism Education Trust

Wittemeyer, K., Charman, T., Cusack, J., Guldberg, K., Hastings, R., Howlin, P., Macnab., N., Parsons, S, Pellicano, L and Slonims, V (2012) Educational provision and outcomes for people on the autism spectrum, London: AET (available to download from www.autismeducationtrust.org.uk)

Published

2015-12-07

How to Cite

Jones, G. (2015). Missing and misdiagnosis on the autism spectrum: Potential consequences and implications for practice. Social Work and Social Sciences Review, 18(1), 15-30. https://doi.org/10.1921/swssr.v18i1.846
Received 2015-12-06
Accepted 2015-12-06
Published 2015-12-07