Negotiating knowledge: Parents' experience of the neuropsychiatric diagnostic process for children with autism

International Journal of Language and Communication Disorders

Volumn 51, Issue 3, 2016, Pages 328-338

  Carlsson, Emilia ^a   Miniscalco, Carmela ^a   Kadesjö, Björn ^a   Laakso, Katja ^a  

^a UNIVERSITY OF GOTHENBURG   (Sweden)

Author keywords

autism spectrum disorder (ASD); diagnostic process; parents; phenomenology

Indexed keywords

AUTISM SPECTRUM DISORDER; BEHAVIOR; CONSUMER ATTITUDE; EDUCATION; FEMALE; FOLLOW UP; HUMAN; INTERDISCIPLINARY COMMUNICATION; INTERPERSONAL COMMUNICATION; MALE; NEUROPSYCHIATRY; PARENT; PRESCHOOL CHILD; PSYCHOLOGICAL INTERVIEW; PSYCHOLOGY; QUALITATIVE RESEARCH; SWEDEN;

AUTISM SPECTRUM DISORDER; CHILD, PRESCHOOL; CONSUMER BEHAVIOR; FEMALE; FOLLOW-UP STUDIES; HUMANS; INTERDISCIPLINARY COMMUNICATION; INTERVIEW, PSYCHOLOGICAL; MALE; NEGOTIATING; NEUROPSYCHIATRY; PARENTS; POWER (PSYCHOLOGY); QUALITATIVE RESEARCH; SWEDEN;

EID: 84958211360     PISSN: 13682822     EISSN: 14606984     Source Type: Journal    
DOI: 10.1111/1460-6984.12210     Document Type: Article

References (45)

1. Abbott, M., Bernard, P., Forge, J., 2013, Communicating a diagnosis of autism spectrum disorder-a qualitative study of parents' experiences. Clinical Child Psychology and Psychiatry, 18, 370-382.
2. American Psychiatric Association (APA), 1994, Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), 4th ed. (Washington, DC: APA).
3. American Psychiatric Association (APA), 2013, Diagnostic and Statistical Manual of Manual of Mental Disorders, 5th Edition (DSM-5) (Washington, DC: APA).
4. Arvidsson, T., Holmberg, L., Reuter, A., Strömbom, A., 2011, Barnhälsovårdsrapport verksamhetsåret 2011.
5. Chamak, B., Bonniau, B., Oudaya, L., Ehrenberg, A., 2011, The autism diagnostic experiences of French parents. Autism, 15, 83-97.
6. Chamak, B., Bonniau, B., 2013, Changes in the Diagnosis of Autism: How Parents and Professionals Act and React in France. Cult Med Psychiatry, 37, 405-426.
7. Crane, L., Chester, J. W., Goddard, L., Henry, L. A., Hill, E. L., 2015, Experiences of autism diagnosis: a survey of over 1000 parents in the United Kingdom. Autism, 1-10.
8. Creswell, J. W., 1994, Research Design: Qualitative & Quantitative Approaches (Thousand Oaks, CA: Sage).
9. Dahlgren, S. O., Gillberg, C., 1989, Symptoms in the first two years of life: a preliminary population study of infantile autism. European Archive of Psychiatry and Neurology Science, 283, 169-174.
10. Eikeseth, S., 2009, Outcome of comprehensive psycho-educational interventions for young children with autism. Research in Developmental Disabilities, 30, 158-178.
11. Gillberg, C., Ehlers, S., Schaumann, H., Jakobsson, G., Dahlgren, S. O., Lindblom, R., BÅgenholm, A., Tjuus, T., Blidner, E., 1990, Autism under age 3 years: a clinical study of 28 cases referred for autistic symptoms in infancy. Journal of Child Psychology and Psychiatry, 31, 921-934.
12. Goin-Kochel, R., Mackintosh, V. H., Myers, B. J., 2006, How many doctors does it takes to make an autism spectrum diagnosis ? Autism, 10, 439-451.
13. Hall, H. R., Graff, J. C., 2011, The relationships among adaptive behaviors of children with autism, family support, parenting stress, and coping. Issues in Comprehensive Pediatric Nursing, 34, 4-25.
14. Hodge, N., RUNSWICK-COLE, K., 2008, Problematizing parent-professional partnerships in education. Disability and Society, 23, 637-647.
15. Howlin, P., Asgharian, A., 1999, The diagnosis of autism and Asperger syndrome: findings from a survey of 770 families. Developmental Medicine and Child Neurology, 41, 834-839.
16. Howlin, P., Moore, A., 1997, Diagnosis in autism, a survey of over 1200 patients in the UK. Autism, 1, 135-162.
17. Huws, J. C., Jones, R. S., Ingledew, D. K., 2001, Parents of children with autism using an email group: a grounded theory study. Journal of Health Psychology, 6, 569-584.
18. Kantzer, A. K., Fernell, E., Gillberg, C., Miniscalco, C., 2013, Autism in community pre-schoolers: developmental profiles. Research in Developmental Disabilities, 34, 2900-2908.
19. Kearney, P. M., Griffin, T., 2001, Between joy and sorrow: being a parent of a child with developmental disability. Journal of Advanced Nursing, 34, 582-592.
20. Keenan, M., Dillenburger, K., Doherty, A., Byrne., T., Gallager, S., 2010, The experiences of parents during diagnosis and forward planning for children with autism spectrum disorder. Journal of Applied Research in Intellectual Disabilities, 23, 390-397.
21. Kleinman, J. M., Ventola, P. E., Pandey, J., Verbalis, A. D., Barton, M., Hodgson, S., Green, J., Dumont-mathieu, T., Robins, D. L., Fein, D., 2008, Diagnostic stability in very young children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 38, 606-615.
22. Kvale, S., Brinkman, S., 2009, InterViews: Learning the Craft of Qualitative Research Interviewing (Lund: Sage).
23. Lindseth, A., Norberg, A., 2004, A phenomenological hermeneutical method for researching lived experience. Scandinavian Journal of Caring Science, 18, 145-153.
24. Lord, C., 1995, Follow-up of two-year-olds referred for possible autism. Journal of Child Psychology and Psychiatry, 36, 1365-1382.
25. Lord, C., Risi, S., Dilavore, P. S., Shulman, C., Thurm, A., Pickles, A., 2006, Autism from 2 to 9 years of age. Archives of General Psychiatry, 63, 694-701.
26. Lord, C., Risi, S., Lambrecht, L., Cook, E. H. Jr, Leventhal, B. L., Dilavore, P. C., Pickles, A., Rutter, M., 2000, The Autism Diagnostic Observation Schedule-Generic: a standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders, 30, 205-223.
27. Magiati, I., Charman, T., Howlin, P., 2007, A two-year prospective follow-up study of community-based early intensive behavioral intervention and specialist nursery provision for children with autism spectrum disorders, Journal of Child Psychology and Psychiatry, 48, 803-812.
28. Malterud, K., 2001, Qualitative research: standards, challenges, and guidelines. Lancet, 358 (9280), 483-488.
29. Mansell, W., Morris, K., 2004, A survey of parents' reactions to the diagnosis of an autistic spectrum disorder by a local service: access to information and use of services. Autism, 8, 387-407.
30. Midence, K., O'neil, M., 1999, The experience of parents in the diagnosis of autism, a pilot study. Autism, 3, 273-285.
31. Miniscalco, C., Nygren, G., Hagberg, B., Kadesjö, B., Gillberg, C., 2006, Neuropsychiatric and neurodevelopmental outcome of children at age 6 and 7 years who screened positive for language problems at 30 months. Developmental Medicine and Child Neurology, 48, 361-366.
32. Minnes, P., Steiner, K., 2008, Parents' views on enhancing the quality of health care for their children with fragile X syndrome, autism or Down syndrome. Child Care, Health and Development, 35, 250-256.
33. Nygren, G., Sandberg, E., Gillstedt, F., Ekeroth, G., Arvidsson, T., Gillberg, C., 2012, A new screening programme for autism in a general population of Swedish toddlers. Research in Developmental Disabilities, 33, 1200-1210.
34. Osborne, L. A., Reed, P., 2008, Parents' perceptions of communication with professionals during the diagnosis of autism. Autism, 12, 309-324.
35. Ozonoff, S., young, G. S., Steinfeld, M. B., Hill, M. M., Cook, I., Hutman, T., Macari, S., Rogers, S. J., Sigman, M., 2009, How early do parent concerns predict later autism diagnosis ? Journal of Developmental Behaviour Pediatrics, 30, 367-375.
36. Paradice, R., Adewusi, A., 2002, It's a continuous fight isn't it? Parents' views of the educational provision for children with speech and language difficulties. Child Language Teaching and Therapy, 18, 255-288.
37. Parsons, S., Lewis, A., Ellins, J., 2009, The views and experiences of parents of children with autistic spectrum disorder about educational provision: comparison with parents of children with other disabilities from an online survey. European Journal of Special Needs Education, 24, 37-58.
38. Pellicano, E., Dinsmore, A., Charman, T., 2014, What should autism research focus upon? Community views and priorities from the United Kingdom. Autism, Special Issue, 1-15.
39. Reed, P., Osborne, L., 2012, Diagnostic practice and its impacts on parental health and child behavior problems in autism spectrum disorders. Archives of Disease in Childhood, 97, 927-931.
40. Russel, G., Norwich, B., 2012, Dilemmas, diagnosis and de-stigmatization: Parental perspectives on the diagnosis of autism spectrum disorders. Clinical Child Psychol Psychiatry, 17(2), 229-245.
41. Safe, A., Joosten, A., Molineux, M., 2012, The experiences of mothers of children with autism: managing multiple roles. Journal of Intellectual Developmental Disabilities, 37, 294-302.
42. The Bercow Report, 2008, A Review of Services for Children and Young People (0-19) with Speech, Language and Communication Needs (available at: www.dcsf.gov.uk/bercowreview, 00632-2008-DOC-EN).
43. Westman Andersson, G., Miniscalco, C., Gillberg, C., 2013a, Autism in preschoolers: does individual clinician's first visit diagnosis agree with final comprehensive diagnosis ? Scientific World Journal, 2013, Article ID 716267, 7 pages.
44. Westman Andersson, G., Miniscalco, C., Johansson, U., Gillberg, C., 2013b, Autism in toddlers: can observation in preschool yield the same information as autism assessment in a specialised clinic ? Scientific World Journal, 2013, 384-745.
45. Woodgate, R. L., Athea, C., Secco, L., 2008, Living in a world of our own: the experience of parents who have a child with autism. Qualitative Health Research, 18, 1075-1083.