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Gepubliceerd in: Journal of Autism and Developmental Disorders 2/2012

01-02-2012 | Original paper

High-Functioning Autism and Asperger’s Disorder: Utility and Meaning for Families

Auteurs: Luisa Ruiz Calzada, Nancy Pistrang, William P. L. Mandy

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 2/2012

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Abstract

We used framework analysis to investigate the utility of pervasive developmental disorder diagnoses, interviewing young people (aged 9–16 years) with high-functioning autistic disorder (AD) and Asperger’s disorder (AsD), and their parents. Twenty two participants from ten families described both gains and costs resulting from diagnosis. Perceived advantages of AD and AsD diagnosis were increased understanding and practical support, and parental empowerment. Disadvantages included the effects of stigma and concerns about validity. Participants tended to consider AsD and AD as interchangeable terms. Findings suggest that the utility of AD and AsD depends upon both their validity and how these diagnoses are received in their cultural, economic and legislative context. Improvement of post-diagnostic services will improve the utility of AD and AsD.

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1
In the UK a Statement of Special Educational Needs (‘a statement’) results from a detailed assessment of a child’s needs by the local education authority, and is associated with additional support and funding for a child. Diagnosis with a PDD generally increases a child’s chances of gaining a statement.
 
2
In a UK school, a Special Educational Needs Coordinator (SENCO) is a specialist teacher responsible for promoting the interests of young people requiring additional support in education.
 
Literatuur
go back to reference American Psychiatric Association. (2000). Diagnostic and Statistical manual of mental disorders (4th ed.). Text Revision. Washington, DC: American Psychiatric Association. American Psychiatric Association. (2000). Diagnostic and Statistical manual of mental disorders (4th ed.). Text Revision. Washington, DC: American Psychiatric Association.
go back to reference Avdi, E., Griffin, C., & Brough, S. (2000). Parents’ constructions of professional knowledge, expertise and authority during an assessment and diagnosis of their child for an autistic spectrum disorder. British Journal of Medical Psychology, 73, 327–338. PubMedCrossRef Avdi, E., Griffin, C., & Brough, S. (2000). Parents’ constructions of professional knowledge, expertise and authority during an assessment and diagnosis of their child for an autistic spectrum disorder. British Journal of Medical Psychology, 73, 327–338. PubMedCrossRef
go back to reference Barker, C., & Pistrang, N. (2005). Quality criteria under methodological pluralism: Implications for conducting and evaluating research. American Journal of Community Psychology, 35(3/4), 201–212. PubMedCrossRef Barker, C., & Pistrang, N. (2005). Quality criteria under methodological pluralism: Implications for conducting and evaluating research. American Journal of Community Psychology, 35(3/4), 201–212. PubMedCrossRef
go back to reference Blacher, J., & McIntyre, L. L. (2006). Syndrome specificity and behavioural disorders in young adults with intellectual disability: Cultural differences in family impact. Journal of Intellectual Disability Research, 50(3), 184–198. PubMedCrossRef Blacher, J., & McIntyre, L. L. (2006). Syndrome specificity and behavioural disorders in young adults with intellectual disability: Cultural differences in family impact. Journal of Intellectual Disability Research, 50(3), 184–198. PubMedCrossRef
go back to reference Carbone, P. S., Behl, D. D., Azor, V., & Murphy, N. A. (2010). The medical home for children with autism spectrum disorders: Parent and pediatrician perspectives. Journal of Autism and Developmental Disorders, 40, 317–324. PubMedCrossRef Carbone, P. S., Behl, D. D., Azor, V., & Murphy, N. A. (2010). The medical home for children with autism spectrum disorders: Parent and pediatrician perspectives. Journal of Autism and Developmental Disorders, 40, 317–324. PubMedCrossRef
go back to reference Cashin, A. (2006). Two terms–one meaning: The conundrum of contemporary nomenclature in autism. Journal of Child and Adolescent Psychiatric Nursing, 19(3), 137–144. PubMedCrossRef Cashin, A. (2006). Two terms–one meaning: The conundrum of contemporary nomenclature in autism. Journal of Child and Adolescent Psychiatric Nursing, 19(3), 137–144. PubMedCrossRef
go back to reference Chilvers, R. (2007). The hidden world of autism. London: Jessica Kingsley Publishers. Chilvers, R. (2007). The hidden world of autism. London: Jessica Kingsley Publishers.
go back to reference Constantino, J. N., & Todd, R. D. (2003). Autistic traits in the general population: A twin study. Archives of General Psychiatry, 60, 524–530. PubMedCrossRef Constantino, J. N., & Todd, R. D. (2003). Autistic traits in the general population: A twin study. Archives of General Psychiatry, 60, 524–530. PubMedCrossRef
go back to reference Daniels, A. M., Rosenberg, R. E., Law, J. K., Lord, C., Kaufmann, W. E., & Law, P. A. (2010). Stability of initial autism spectrum disorder diagnoses in community settings. Journal of Autism and Developmental Disorders, 18, 236–246. Daniels, A. M., Rosenberg, R. E., Law, J. K., Lord, C., Kaufmann, W. E., & Law, P. A. (2010). Stability of initial autism spectrum disorder diagnoses in community settings. Journal of Autism and Developmental Disorders, 18, 236–246.
go back to reference First, M. B., Pincus, H. A., Levine, J. B., Williams, J. B. W., Ustun, B., & Peele, R. (2004). Clinical utility as a criterion for revising psychiatric diagnoses. American Journal of Psychiatry, 161(6), 946–954. PubMedCrossRef First, M. B., Pincus, H. A., Levine, J. B., Williams, J. B. W., Ustun, B., & Peele, R. (2004). Clinical utility as a criterion for revising psychiatric diagnoses. American Journal of Psychiatry, 161(6), 946–954. PubMedCrossRef
go back to reference Geschwind, D. H., & Levitt, P. (2007). Autism spectrum disorders: Developmental disconnection syndromes. Current Opinion in Neurobiology, 17, 103–111. PubMedCrossRef Geschwind, D. H., & Levitt, P. (2007). Autism spectrum disorders: Developmental disconnection syndromes. Current Opinion in Neurobiology, 17, 103–111. PubMedCrossRef
go back to reference Gray, D. E. (2003). Gender and coping: The parents of children with high functioning autism. Social Science and Medicine, 56, 631–642. PubMedCrossRef Gray, D. E. (2003). Gender and coping: The parents of children with high functioning autism. Social Science and Medicine, 56, 631–642. PubMedCrossRef
go back to reference Happé, F., Ronald, A., & Plomin, R. (2006). Time to give up on a single explanation for autism. Nature Neuroscience, 9(10), 1218–1220. PubMedCrossRef Happé, F., Ronald, A., & Plomin, R. (2006). Time to give up on a single explanation for autism. Nature Neuroscience, 9(10), 1218–1220. PubMedCrossRef
go back to reference Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45, 212–229. PubMedCrossRef Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45, 212–229. PubMedCrossRef
go back to reference Howlin, P., & Moore, A. (1997). Diagnosis in autism: A survey of over 1,200 patients in the UK. Autism, 1(2), 135–162. CrossRef Howlin, P., & Moore, A. (1997). Diagnosis in autism: A survey of over 1,200 patients in the UK. Autism, 1(2), 135–162. CrossRef
go back to reference Hurlbutt, K., & Chalmers, L. (2002). Adults with autism speak out: Perceptions of their life experiences. Focus on Autism and Other Developmental Disabilities, 17(2), 103–111. CrossRef Hurlbutt, K., & Chalmers, L. (2002). Adults with autism speak out: Perceptions of their life experiences. Focus on Autism and Other Developmental Disabilities, 17(2), 103–111. CrossRef
go back to reference Jones, R. S., Zahl, A., & Huws, J. C. (2001). First-hand accounts of emotional experiences in autism: A qualitative analysis. Disability and Society, 16(3), 393–401. CrossRef Jones, R. S., Zahl, A., & Huws, J. C. (2001). First-hand accounts of emotional experiences in autism: A qualitative analysis. Disability and Society, 16(3), 393–401. CrossRef
go back to reference Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–250. Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–250.
go back to reference Kendell, R., & Jablensky, A. (2003). Distinguishing between the validity and utility of psychiatric diagnoses. American Journal of Psychiatry, 160(1), 4–12. PubMedCrossRef Kendell, R., & Jablensky, A. (2003). Distinguishing between the validity and utility of psychiatric diagnoses. American Journal of Psychiatry, 160(1), 4–12. PubMedCrossRef
go back to reference Kendler, K. S. (1980). The nosologic validity of paranoia (simple delusional disorder). A Review. Archives of General Psychiatry, 37, 699–706. CrossRef Kendler, K. S. (1980). The nosologic validity of paranoia (simple delusional disorder). A Review. Archives of General Psychiatry, 37, 699–706. CrossRef
go back to reference Kirk, S. (2007). Methodological and ethical issues in conducting qualitative research with children and young people: A literature review. International Journal of Nursing Studies, 44, 1250–1260. PubMedCrossRef Kirk, S. (2007). Methodological and ethical issues in conducting qualitative research with children and young people: A literature review. International Journal of Nursing Studies, 44, 1250–1260. PubMedCrossRef
go back to reference Kreuger, M., & Kendall, J. (2001). Descriptions of self: An exploratory study of adolescents with ADHD. Journal of Child and Adolescent Psychiatric Nursing, 14(2), 61–72. CrossRef Kreuger, M., & Kendall, J. (2001). Descriptions of self: An exploratory study of adolescents with ADHD. Journal of Child and Adolescent Psychiatric Nursing, 14(2), 61–72. CrossRef
go back to reference Landsman, G. (2003). Emplotting children’s lives: Developmental delay vs. disability. Social Science and Medicine, 26, 1947–1960. Landsman, G. (2003). Emplotting children’s lives: Developmental delay vs. disability. Social Science and Medicine, 26, 1947–1960.
go back to reference Leekam, S., Libby, S., Wing, L., Gould, J., & Gillberg, C. (2000). Comparison of ICD-10 and Gillberg’s criteria for Asperger syndrome. Autism, 4(1), 11–28. CrossRef Leekam, S., Libby, S., Wing, L., Gould, J., & Gillberg, C. (2000). Comparison of ICD-10 and Gillberg’s criteria for Asperger syndrome. Autism, 4(1), 11–28. CrossRef
go back to reference Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Jr., Leventhal, B. L., Di Lavore, P. C., et al. (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. PubMedCrossRef Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Jr., Leventhal, B. L., Di Lavore, P. C., et al. (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. PubMedCrossRef
go back to reference Mahoney, W. J., Szatmari, P., MacLean, J. E., Bryson, S. E., Bartolucci, G., Walter, S. D., et al. (1998). Reliability and accuracy of differentiating pervasive developmental disorder subtypes. Journal of the American Academy of Child and Adolescent Psychiatry, 37(3), 278–285. PubMedCrossRef Mahoney, W. J., Szatmari, P., MacLean, J. E., Bryson, S. E., Bartolucci, G., Walter, S. D., et al. (1998). Reliability and accuracy of differentiating pervasive developmental disorder subtypes. Journal of the American Academy of Child and Adolescent Psychiatry, 37(3), 278–285. PubMedCrossRef
go back to reference Mandy, W. P., Charman, T., Gilmour, J. & Skuse, D. (2011). Toward specifying pervasive developmental disorder not otherwise specified. Autism Research. doi: 10.​1002/​aur.​178. Mandy, W. P., Charman, T., Gilmour, J. & Skuse, D. (2011). Toward specifying pervasive developmental disorder not otherwise specified. Autism Research. doi: 10.​1002/​aur.​178.
go back to reference Mandy, W. P., & Skuse, D. H. (2008). Research review: What is the association between the social-communication element of autism and repetitive interests, behaviours and activities? Journal of Child Psychology and Psychiatry, 49, 795–808. PubMedCrossRef Mandy, W. P., & Skuse, D. H. (2008). Research review: What is the association between the social-communication element of autism and repetitive interests, behaviours and activities? Journal of Child Psychology and Psychiatry, 49, 795–808. PubMedCrossRef
go back to reference Mayes, S. D., Calhoun, S. L., & Crites, D. L. (2001). Does DSM-IV Asperger’s disorder exist? Journal of Abnormal Child Psychology, 29(3), 263–271. PubMedCrossRef Mayes, S. D., Calhoun, S. L., & Crites, D. L. (2001). Does DSM-IV Asperger’s disorder exist? Journal of Abnormal Child Psychology, 29(3), 263–271. PubMedCrossRef
go back to reference Mays, N., & Pope, C. (2000). Qualitative research in health care. Assessing quality in qualitative research. BMJ, 320, 50–52. PubMedCrossRef Mays, N., & Pope, C. (2000). Qualitative research in health care. Assessing quality in qualitative research. BMJ, 320, 50–52. PubMedCrossRef
go back to reference McCabe, H. (2007). Parent advocacy in the face of adversity: Autism and families in the People’s Republic of China. Focus on Autism and Other Developmental Disabilities, 22(1), 39–50. CrossRef McCabe, H. (2007). Parent advocacy in the face of adversity: Autism and families in the People’s Republic of China. Focus on Autism and Other Developmental Disabilities, 22(1), 39–50. CrossRef
go back to reference Midence, K., & O’Neill, M. (1999). The experience of parents in the diagnosis of autism: A pilot study. Autism, 3(3), 273–285. CrossRef Midence, K., & O’Neill, M. (1999). The experience of parents in the diagnosis of autism: A pilot study. Autism, 3(3), 273–285. CrossRef
go back to reference Newman, B., & Newman, P. (2008). Development through life: A psychosocial perspective (10th ed.). Belmont, CA: Wadsworth Cengage Learning. Newman, B., & Newman, P. (2008). Development through life: A psychosocial perspective (10th ed.). Belmont, CA: Wadsworth Cengage Learning.
go back to reference Nissenbaum, M. S., Tollefson, N., & Reese, R. M. (2002). The interpretative conference: Sharing a diagnosis of autism with families. Focus on Autism and Other Developmental Disabilities, 17(1), 30–43. CrossRef Nissenbaum, M. S., Tollefson, N., & Reese, R. M. (2002). The interpretative conference: Sharing a diagnosis of autism with families. Focus on Autism and Other Developmental Disabilities, 17(1), 30–43. CrossRef
go back to reference O’Brien, M. (2007). Ambiguous loss in families of children with autism spectrum disorders. Family Relations, 56(2), 135–146. CrossRef O’Brien, M. (2007). Ambiguous loss in families of children with autism spectrum disorders. Family Relations, 56(2), 135–146. CrossRef
go back to reference Pope, C., Ziebland, S., & Mays, N. (2000). Analysing qualitative data. British Medical Journal, 320, 114–117. PubMedCrossRef Pope, C., Ziebland, S., & Mays, N. (2000). Analysing qualitative data. British Medical Journal, 320, 114–117. PubMedCrossRef
go back to reference Portway, S. M., & Johnson, B. (2005). Do you know i have Asperger’s syndrome? risks of a non-obvious disability. Health Risk and Society, 7(1), 73–83. CrossRef Portway, S. M., & Johnson, B. (2005). Do you know i have Asperger’s syndrome? risks of a non-obvious disability. Health Risk and Society, 7(1), 73–83. CrossRef
go back to reference Reichow, B., & Volkmar, F. R. (2010). Social skills interventions for individuals with autism: Evaluation for evidence-based practices within a best evidence synthesis framework. Journal of Autism and Developmental Disorders, 40, 149–166. PubMedCrossRef Reichow, B., & Volkmar, F. R. (2010). Social skills interventions for individuals with autism: Evaluation for evidence-based practices within a best evidence synthesis framework. Journal of Autism and Developmental Disorders, 40, 149–166. PubMedCrossRef
go back to reference Ritchie, J., & Spencer, L. (1994). Qualitative data analysis for applied policy research. In A. Bryman & R. G. Burgess (Eds.), Analysing qualitative data. London: Routledge. Ritchie, J., & Spencer, L. (1994). Qualitative data analysis for applied policy research. In A. Bryman & R. G. Burgess (Eds.), Analysing qualitative data. London: Routledge.
go back to reference Robins, E., & Guze, S. B. (1970). Establishment of diagnostic validity in psychiatric illness: Its application to schizophrenia. American Journal of Psychiatry, 126, 983–987. PubMed Robins, E., & Guze, S. B. (1970). Establishment of diagnostic validity in psychiatric illness: Its application to schizophrenia. American Journal of Psychiatry, 126, 983–987. PubMed
go back to reference Seida, J. K., Ospina, M. B., Karkhaneh, M., Hartling, L., Smith, V., & Clark, B. (2009). Systematic reviews of psychosocial interventions for autism: An umbrella review. Developmental Medicine and Child Neurology, 51, 95–104. PubMedCrossRef Seida, J. K., Ospina, M. B., Karkhaneh, M., Hartling, L., Smith, V., & Clark, B. (2009). Systematic reviews of psychosocial interventions for autism: An umbrella review. Developmental Medicine and Child Neurology, 51, 95–104. PubMedCrossRef
go back to reference Siklos, S., & Kerns, K. A. (2007). Assessing the diagnostic experiences of a small sample of parents of children with autism spectrum disorders. Research in Developmental Disabilities, 28, 9–22. PubMedCrossRef Siklos, S., & Kerns, K. A. (2007). Assessing the diagnostic experiences of a small sample of parents of children with autism spectrum disorders. Research in Developmental Disabilities, 28, 9–22. PubMedCrossRef
go back to reference Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: Prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child and Adolescent Psychiatry, 47, 921–929. PubMedCrossRef Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: Prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child and Adolescent Psychiatry, 47, 921–929. PubMedCrossRef
go back to reference Skuse, D. H., Mandy, W., Steer, C., Miller, L. L., Goodman, R., Lawrence, K., et al. (2009). Social communication competence and functional adaptation in a General population of children: Preliminary evidence for sex-by-verbal IQ differential risk. Journal of the American Academy of Child and Adolescent Psychiatry, 48(2), 128–137. PubMedCrossRef Skuse, D. H., Mandy, W., Steer, C., Miller, L. L., Goodman, R., Lawrence, K., et al. (2009). Social communication competence and functional adaptation in a General population of children: Preliminary evidence for sex-by-verbal IQ differential risk. Journal of the American Academy of Child and Adolescent Psychiatry, 48(2), 128–137. PubMedCrossRef
go back to reference Skuse, D., Warrington, R., Bishop, D., Chowdhury, U., Lau, J., Mandy, W., et al. (2004). The developmental, dimensional and diagnostic interview (3di): A novel computerized assessment for autism spectrum disorders. Journal of the American Academy of Child and Adolescent Psychiatry, 43, 548–558. PubMedCrossRef Skuse, D., Warrington, R., Bishop, D., Chowdhury, U., Lau, J., Mandy, W., et al. (2004). The developmental, dimensional and diagnostic interview (3di): A novel computerized assessment for autism spectrum disorders. Journal of the American Academy of Child and Adolescent Psychiatry, 43, 548–558. PubMedCrossRef
go back to reference Smith, J. A. (1995). Semi-structured interviewing and qualitative analysis. In J. A. Smith, R. Harre, & L. Van Langenhove (Eds.), Rethinking methods in psychology. London: Sage. Smith, J. A. (1995). Semi-structured interviewing and qualitative analysis. In J. A. Smith, R. Harre, & L. Van Langenhove (Eds.), Rethinking methods in psychology. London: Sage.
go back to reference Stiles, W. B. (1999). Evaluating qualitative research. Evidence-Based Mental Health, 2, 99–101. CrossRef Stiles, W. B. (1999). Evaluating qualitative research. Evidence-Based Mental Health, 2, 99–101. CrossRef
go back to reference Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks, CA: Sage. Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks, CA: Sage.
go back to reference Streiner, D. L., & Norman, G. R. (1995). Health measurement scales. Oxford: Oxford University Press. Streiner, D. L., & Norman, G. R. (1995). Health measurement scales. Oxford: Oxford University Press.
go back to reference Vismara, L. A., & Rogers, S. J. (2010). Behavioral treatments in autism spectrum disorder: What do we know? Annual Review of Clinical Psychology, 6, 447–468. PubMedCrossRef Vismara, L. A., & Rogers, S. J. (2010). Behavioral treatments in autism spectrum disorder: What do we know? Annual Review of Clinical Psychology, 6, 447–468. PubMedCrossRef
go back to reference Williams, J. (2006). Learning from mothers: How Myths, policies and practices affect the detection of subtle developmental problems in children. Child: Care, Health and Development, 33(3), 282–290. CrossRef Williams, J. (2006). Learning from mothers: How Myths, policies and practices affect the detection of subtle developmental problems in children. Child: Care, Health and Development, 33(3), 282–290. CrossRef
go back to reference Willig, C. (2008). Introducing qualitative research in psychology: Adventures in theory and method (2nd ed.). Buckingham: Open University Press. Willig, C. (2008). Introducing qualitative research in psychology: Adventures in theory and method (2nd ed.). Buckingham: Open University Press.
go back to reference Woodgate, R. L., Ateah, 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. PubMedCrossRef Woodgate, R. L., Ateah, 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. PubMedCrossRef
Metagegevens
Titel
High-Functioning Autism and Asperger’s Disorder: Utility and Meaning for Families
Auteurs
Luisa Ruiz Calzada
Nancy Pistrang
William P. L. Mandy
Publicatiedatum
01-02-2012
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 2/2012
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-011-1238-5