Previous research on early intensive intervention in autistic spectrum disorder (ASD) has largely focused on outcomes of treatment for children. Although some account has been taken of parental viewpoints, the potential impact of intervention on families has not achieved the same kind of research prominence. This contrasts with the considerable literature that exists exploring the experiences of parents of children with a wide range of special needs and disabilities. This article reports data from a Local Education Authority (LEA)-funded research commission designed to inform future policy and service provision. Themes are extracted from interview transcripts and questionnaire responses to reflect the views of 15 families, including nine whose children were receiving an LEA pilot intervention programme for ASD, and six who were managing their own interventions based on Applied Behavioural Analysis (ABA). Implications are drawn for future service delivery in support of key principles for early intervention for all families of young children with developmental disabilities.
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References
1.
Besag, F. M. C. (2002) ‘Childhood Epilepsy in Relation to Mental Handicap and Behavioural Disorders’ , Journal of Child Psychology and Psychiatry43(1): 103-131 .
2.
Bishop, D. V. M. (1993) ‘Annotation: Autism, Executive Functions and Theory of Mind: A Neuropsychological Perspective’ , Journal of Child Psychology and Psychiatry34(3): 279-293 .
3.
Bristol City Council (2000) Provision for Pupils with Autistic Spectrum Disorder. Education Committee Report, 13 April.
4.
Bristol, M. M. (1984) ‘Family Resources and Successful Adaptation to Autistic Children’, in E. Schopler and G. B. Mesibov (eds) The Effects of Autism on the Family, pp. 289-310. New York and London: Plenum Press .
5.
Cantwell, D. P. and Baker, L. (1984) ‘Research Concerning Families of Children with Autism’, in E. Schopler and G. B. Mesibov (eds) The Effects on Autism on the Family, pp. 41-63. New York and London: Plenum Press .
6.
Case, S. (2001) ‘Learning to Partner, Disabling Conflict: Early Indicators of an Improving Relationship Between Parents and Professionals with Regard to Service Provision for Children with Learning Disabilities’ , Disability and Society16(6): 837-854 .
7.
Cattell-Gordon, D. and Cattell-Gordon, D. (1998) ‘The Development of an Effective Applied Behavior Analysis Program for a Young Child with Autism: A Parent’s Perspective’ , Infants and Young Children10(3): 79-85 .
8.
Charman, T. and Baird, G. (2002) ‘Practitioner Review: Diagnosis of Autism Spectrum Disorder in 2-and 3-year-old Children’ , Journal of Child Psychology and Psychiatry43(3): 289-305 .
9.
Cox, A., Klein, K., Charman, T., Baird, G., Baron-Cohen, S., Swettenham, J., Drew, A. and Wheelwright, S. (1999) ‘Autistic Spectrum Disorders at 20 and 42 Months of Age: Stability of Clinical and ADI-R Diagnosis’ , Journal of Child Psychology and Psychiatry40(5): 719-733 .
10.
Dawson, G. and Osterling, J. (1997) ‘Early Intervention in Autism’, in M. Guralnik (ed.) The Effectiveness of Early Intervention, pp. 307-326. Baltimore: Brookes .
11.
Department for Education and Skills and Department of Health (DfES and DoH) (2002) Autistic Spectrum Disorders: Good Practice Guidance. Guidance on Autistic Spectrum Disorders and Pointers to Good Practice. London: Department for Education and Skills .
12.
Department for Education and Skills and Department of Health (DfES and DoH) (2003) Together from the Start: Practical Guidance for Professionals Working with Disabled Children (Birth to Third Birthday) and their Families. London: Department for Education and Skills .
13.
Dunlap, G. and Fox, L. (1999) ‘A Demonstration of Behavioral Support for Young Children with Autism’ , Journal of Positive Behavior Interventions1(2): 77-87 .
14.
Dyson, L. (1993) ‘Response to the Presence of a Child with Disabilities’ , American Journal of Mental Retardation98(2): 207-218 .
15.
Eiser, C. (1990) ‘Psychological Effects of Chronic Disease’ , Journal of Child Psychology and Psychiatry31(1): 85-98 .
16.
Evans, J., Castle, F., Barraclough, S. and Jones, G. (2001) Making A Difference: Early Interventions for Children with Autistic Spectrum Disorders. Slough: NFER .
17.
Freedman, R. I. and Capobianco Boyer, N. (2000) ‘The Power to Choose: Supports for Families Caring for Individuals with Developmental Disabilities’ , Health and Social Work25(1): 59-68 .
18.
Gresham, F. and MacMillan, D. (1997) ‘“Autistic Recovery”: An Analysis and Critique of the Empirical Evidence on the Early Intervention Project’ , Behavioural Disorders22(4): 185-201 .
19.
Gresham, F. and MacMillan, D. (1998) ‘Early Intervention Project: Can its Claims Be Substantiated and its Effects Replicated?’ , Journal of Autism and Developmental Disorders28(1): 5-13 .
20.
Gross, J. (2000) ‘Paper Promises? Making the Code Work for You’ , Support for Learning15(3): 126-133 .
21.
Hastings, R. and Johnson, E. (2001) ‘Stress in UK Families Conducting Intensive Home-Based Behavioral Intervention for their Young Child with Autism’ , Journal of Autism and Developmental Disorders31(3): 327-336 .
22.
Hawkins, D. (1996) Spontaneous Language Use’, in R. L. Koegel and L. K. Koegel (eds) Teaching Children with Autism: Strategies for Initiating Positive Interactions and Improving Learning Opportunities, pp. 43-52. London: Paul H. Brookes Publishing Co.
23.
Howlin, P. (1998) ‘Practitioner Review: Psychological and Educational Treatments for Autism’ , Journal of Child Psychology and Psychiatry39(3): 307-322 .
24.
Jordan, R., Jones, G. and Murray, D. (1998) Educational Interventions for Children with Autism: A Literature Review of Recent and Current Research (DfEE Research Report 77). Norwich: HMSO .
25.
Lovaas, O. I., Smith, T. and McEachin, J. (1989) ‘Clarifying Comments on the Young Autism Study: Reply to Schopler, Short and Mesibov’ , Journal of Consulting and Clinical Psychology57(1): 165-167 .
26.
McCollum, J. (2002) ‘Influencing the Development of Young Children with Disabilities: Current Themes in Early Intervention’ , Child and Adolescent Mental Health7(1): 4-9 .
27.
Mandlawitz, M. M. (1998) Young Children with Autism: Navigating the Legal System. Alexandria, VA: National Association of State Directors of Special Education .
Medical Research Council (MRC) (2000) Review of Autism Research: Epidemiology and Causes. London: MRC .
30.
Midence, K. and O’Neill, M. (1999) ‘The Experience of Parents in the Diagnosis of Autism’ , Autism3(3): 273-285 .
31.
Moes, D. (1996) ‘Parent Education and Parenting Stress’, in R. L. Koegel and L. K. Koegel (eds) Teaching Children with Autism: Strategies for Initiating Positive Interactions and Improving Learning Opportunities, pp. 79-93. London: Paul H. Brookes Publishing Co.
32.
Pinney, A. (2002) ‘In Need of Review? The Audit Commission’s Report on Statutory Assessment and Statements of Special Educational Needs’ , British Journal of Special Education29(3): 118-122 .
33.
Potter, C. and Whittaker, C. (2001) Enabling Communication in Children with Autism. London: Jessica Kingsley .
34.
Punch, K. F. (1998) Introduction to Social Research: Quantitative and Qualitative Approaches. London: Sage Publications .
35.
Redmond, B. and Richardson, V. (2003) ‘Just Getting on with it: Exploring the Service Needs of Mothers who Care for Young Children with Severe/Profound and Life-Threatening Intellectual Disability’ , Journal of Applied Research in Intellectual Disabilities16(3): 205-218 .
36.
Rutter, M., Bailey, A., Bolton, P. and Le Couteur, A. (1994) ‘Autism and Known Medical Conditions: Myth and Substance’ , Journal of Child Psychology and Psychiatry35(2): 311-322 .
37.
Saloviita, T, Italinna, M. and Leinonen, E. (2003) ‘Explaining the Parental Stress of Fathers and Mothers Caring for a Child with Intellectual Disability: a Double ABCX Model’ , Journal of Intellectual Disability Research47(4/5): 300-312 .
38.
Schopler, E. and Mesibov, G., eds (1984) The Effects of Autism on the Family. New York: Plenum Press .
39.
Schopler, E., Short, A. and Mesibov, G. (1989) ‘Relation of Behavioural Treatment to “Normal Functioning”: Comment on Lovaas’ , Journal of Consulting and Clinical Psychology57(1): 162-164 .
40.
Schreibman, L. (2000) ‘Intensive Behavioral/Psychoeducational Treatments for Autism: Research Needs and Future Directions’ , Journal of Autism and Developmental Disorders30(5): 373-378 .
41.
Shearn, J. and Todd, S. (2000) ‘Maternal Employment and Family Responsibilities: the Perspectives of Mothers of Children with Intellectual Disabilities’ , Journal of Applied Research in Intellectual Disabilities13(3): 109-131 .
42.
Shields, J. (2001) ‘The NAS Early Bird Programme’ , Autism5(1): 49-56 .
43.
Smith, T. and Lovaas, O. I. (1997) ‘The UCLA Young Autism Project: A Reply to Gresham and MacMillan’ , Behavioral Disorders22(4): 202-218 .
44.
Sperry, L. A., Whaley, K. T., Shaw, E. and Brame, K. (1999) ‘Services for Young Children with Autism Spectrum Disorder: Voices of Parents and Providers’ , Infants and Young Children11(4): 17-33 .
45.
Strain, P. S., Wolery, M., Izeman, S. (1998) ‘Considerations for Administrators in the Design of Service Options for Young Children with Autism and their Families’ , Young Exceptional Children1(2): 8-16 .
46.
Wallander, J. and Varni, J. (1998) ‘Effects of Pediatric Chronic Physical Disorder on Child and Family Adjustment’ , Journal of Child Psychology and Psychiatry39(1): 29-46 .
47.
Webster, A., Feiler, A. and Webster, V. (in press) ‘Early Intensive Family Intervention and Evidence of Effectiveness: Lessons from the South West Autism Programme’ , Early Child Development and Care.
48.
Webster, A., Webster, V. and Feiler, A. (2002) ‘Research Evidence, Polemic and Evangelism: How Decisions are Made on Early Intervention in Autistic Spectrum Disorder’ , Educational and Child Psychology19(3): 54-67 .
