Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

25-05-2021 | Original Paper

The Feedback Session of an Autism Assessment: A Scoping Review of Clinical Practice Guideline Recommendations

Auteurs: Ellen Pattison, Alexandra Ure, Sharon R. Mittiga, Katrina Williams, Nerelie C. Freeman

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 4/2022

Abstract

This review aimed to assess the quality and content of recommendations for delivering an autism diagnosis, published internationally within clinical practice guidelines. Seventeen relevant guidelines were identified. When methodological information was provided, recommendations for feedback were predominantly formed through consensus. Recommendations consistently included who should attend feedback, the timing and mode of delivery, the clinician’s manner, and what should be discussed and/or included in an accompanying report. Specific recommendations were not consistent however, and a number of gaps were identified, such as the inclusion of educators and educational specific recommendations. Although individual variation is necessary for autism diagnosis disclosure, agreement on minimum standards of practice is warranted. Further investigation is required to establish best practice.

vorige artikel Autism Diagnostic Interview-Revised Within DSM-5 Framework: Test of Reliability and Validity in Chinese Children

volgende artikel Comparing Fathers’ and Mothers’ Perspectives About Their Child’s Autism Spectrum Disorder

Alleen toegankelijk voor geautoriseerde gebruikers

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. https://doi.org/10.1177/1359104512455813CrossRefPubMed

Academy of Medicine Singapore. (2010). Academy of Medicine Singapore-Ministry of Health clinical practice guidelines: Autism Spectrum Disorders in pre-school children. Singapore Medical Journal, 51, 255–263

Adler, K., Salanterä, S., Leino-Kilpi, H., & Grädel, B. (2015). An integrated literature review of the knowledge needs of parents with children with special health care needs and of instruments to assess these needs. Infants & Young Children, 28, 46–71. https://doi.org/10.1097/IYC.0000000000000028CrossRef

Amer, Y. S., et al. (2019). Appraisal of clinical practice guidelines for the management of attention deficit hyperactivity disorder (ADHD) using the AGREE II Instrument: A systematic review. PLoS ONE. https://doi.org/10.1371/journal.pone.0219239CrossRefPubMedPubMedCentral

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders. (5th ed.). American Psychiatric Association.

Andersson, G. W., Miniscalco, C., & Gillberg, C. (2014). Preschoolers assessed for autism: Parent and teacher experiences of the diagnostic process. Research in Developmental Disabilities, 35, 3392–3402. https://doi.org/10.1016/j.ridd.2014.08.027CrossRefPubMed

Autism Spectrum Disorders Special Interst Group. (2010). Best practice guidelines for the assessment and diagnosis of autistic spectrum disorders for children and adolescents (birth to 18 years). The Psychological Society of Ireland.

Barrett, F. (2019). Teacher adherence to school-based psychoeducational report recommendations. University of Calgary

Barthélémy, C., Fuentes, J., Howlin, P., & van der Gaag, R. (2019). People with autism spectrum disorder. Identification, understanding, intervention. Brussles, Belgium: Autism-Europe.

Bennett, K., Courtney, D., Duda, S., Henderson, J., & Szatmari, P. (2018). An appraisal of the trustworthiness of practice guidelines for depression and anxiety in children and youth. Depression and Anxiety, 35, 530–540. https://doi.org/10.1002/da.22752CrossRefPubMed

Bent, C. A., Dissanayake, C., & Barbaro, J. (2015). Mapping the diagnosis of autism spectrum disorders in children aged under 7 years in Australia, 2010–2012. Medical Journal of Australia, 202, 317–320. https://doi.org/10.5694/mja14.00328CrossRef

Brian, J. A., Zwaigenbaum, L., & Ip, A. (2019). Standards of diagnostic assessment for autism spectrum disorder. Paediatrics & Child Health, 24, 444. https://doi.org/10.1093/pch/pxz117CrossRef

Brogan, C. A., & Knussen, C. (2003). The disclosure of a diagnosis of an autistic spectrum disorder: Determinants of satisfaction in a sample of Scottish parents. Autism, 7, 31–46. https://doi.org/10.1177/1362361303007001004CrossRefPubMed

Brouwers, M. C., et al. (2010). AGREE II: Advancing guideline development, reporting and evaluation in healthcare. Canandia Medical Association Journal. https://doi.org/10.1503/cmaj.090449CrossRef

California Department of Developmental Services, Northern California Autism Collective (2002). Autism spectrum disorders: Best practice for screening, diagnosis and assessment.

Carlsson, E., Miniscalco, C., Kadesjö, B., & Laakso, K. (2016). Negotiating knowledge: Parents’ experience of the neuropsychiatric diagnostic process for children with autism. International Journal of Language & Communication Disorders, 51, 328–338. https://doi.org/10.1111/1460-6984.12210CrossRef

Casey, L. B., Zanksas, S., Meindl, J. N., Parra, G. R., Cogdal, P., & Powell, K. (2012). Parental symptoms of posttraumatic stress following a child’s diagnosis of autism spectrum disorder: A pilot study. Research in Autism Spectrum Disorders, 6, 1186–1193. https://doi.org/10.1016/j.rasd.2012.03.008CrossRef

Crane, L., Batty, R., Adeyinka, H., Goddard, L., Henry, L. A., & Hill, E. L. (2018). Autism diagnosis in the United Kingdom: Perspectives of autistic adults, parents and professionals. Journal of AUTISM and Developmental Disorders, 48, 3761. https://doi.org/10.1007/s10803-018-3639-1CrossRefPubMedPubMedCentral

Crane, L., Chester, J. W., Goddard, L., Henry, L. A., & Hill, E. (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism, 20, 153–162. https://doi.org/10.1177/1362361315573636CrossRefPubMed

de Meyrick, J. (2003). The Delphi method and health research. Health Education, 103, 7–16. https://doi.org/10.1108/09654280310459112CrossRef

Duckett, S. (2020). What should primary care look like after the COVID-19 pandemic? Australian Journal of Primary Health, 26, 207–211. https://doi.org/10.1071/PY20095CrossRefPubMed

Fallowfield, L., & Jenkins, V. (2004). Communicating sad, bad, and difficult news in medicine. The Lancet, 363, 312–319. https://doi.org/10.1016/S0140-6736(03)15392-5CrossRef

Filipek, P. A., Accardo, P. J., Ashwal, S., Baranek, G. T., Cook, E. H., Dawson, G., Gordon, B., Gravel, J. S., Johnson, C. P., Kallen, R. J., Levy, S. E., Minshew, N. J., Ozonoff, S., Prizant, B. M., Rapin, I., Rogers, S. J., Stone, W. L., Teplin, S. W., Tuchman, R. F., & Volkmar, F. R. (2000). Practice parameter: Screening and diagnosis of autism. Neurology, 55, 468–479.CrossRef

Harrison, M. E., & Walling, A. (2010). What do we know about giving bad news? A review. Clinical Pediatrics, 49, 619–626. https://doi.org/10.1177/0009922810361380CrossRefPubMed

Hasnat, M., & Graves, P. (2000). Disclosure of developmental disability: A study of parent satisfaction and the determinants of satisfaction. Journal of Paediatrics and Child Health, 36, 32–35. https://doi.org/10.1046/j.1440-1754.2000.00463.xCrossRefPubMed

Haute Autorité de Santé. (2018). Autism spectrum disorder—Warning signs, detection, diagnosis and assessment in children and adolescents. Saint-Denis La Plaine.

Hayes, J., Ford, T., Rafeeque, H., & Russell, G. (2018). Clinical practice guidelines for diagnosis of autism spectrum disorder in adults and children in the UK: A narrative review. BMC Psychiatry. https://doi.org/10.1186/s12888-018-1800-1CrossRefPubMedPubMedCentral

Hennel, S., et al. (2016). Diagnosing autism: Contemporaneous surveys of parent needs and paediatric practice. Journal of Paediatrics and Child Health, 52, 506–511. https://doi.org/10.1111/jpc.13157CrossRefPubMed

Hohmann, E., Cote, M. P., & Brand, J. C. (2018). Research pearls: Expert consensus based evidence using the Delphi method. Arthroscopy, 34, 3278–3282. https://doi.org/10.1016/j.arthro.2018.10.004CrossRefPubMed

Johnson, C. P., & Myers, S. M. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120, 1183. https://doi.org/10.1542/peds.2007-2361CrossRefPubMed

Jorm, A. F. (2015). Using the Delphi expert consensus method in mental health research. Australian and New Zealand Journal of Psychiatry, 49, 887–897. https://doi.org/10.1177/0004867415600891CrossRef

Kanne, S. M., Gerber, A. J., Quirmbach, L. M., Sparrow, S. S., Cicchetti, D. V., & Saulnier, C. A. (2011). The role of adaptive behavior in autism spectrum disorders: Implications for functional outcome. Journal of Autism and Developmental Disorders, 41, 1007–1018. https://doi.org/10.1007/s10803-010-1126-4CrossRefPubMed

Klopper, F. K. (2017). High-functioning autism spectrum disorder: phenotypic subgroups, diagnostic instruments, and predictors of behavioural and emotional functioning.

Kraper, C. K., Kenworthy, L., Popal, H., Martin, A., & Wallace, G. L. (2017). The gap between adaptive behavior and intelligence in autism persists into young adulthood and is linked to psychiatric co-morbidities. Journal of Autism and Developmental Disorders, 47, 3007–3017. https://doi.org/10.1007/s10803-017-3213-2CrossRefPubMed

Lecouturier, J., et al. (2008). Appropriate disclosure of a diagnosis of dementia: Identifying the key behaviours of “best practice.” BMC Health Services Research, 8, 95–95. https://doi.org/10.1186/1472-6963-8-95CrossRefPubMedPubMedCentral

Levac, D., Colquhoun, H., & O’Brien, K. K. (2010). Scoping studies: Advancing the methodology. Implementation Science: IS, 5, 69. https://doi.org/10.1186/1748-5908-5-69CrossRefPubMedCentral

Liddicoat, P. (2018). Breaking bad news. InnovAiT, 11, 671–675. https://doi.org/10.1177/1755738018797963CrossRef

Ministries of Health and Eduction. (2016). New Zealand autism spectrum disorders guideline. Ministry of Health.

Mulligan, J., Macculloch, R., Good, B., & Nicholas, D. B. (2012). Transparency, hope, and empowerment: A model for partnering with parents of a child with autism spectrum disorder at diagnosis and beyond. Social Work in Mental Health, 10, 311–330. https://doi.org/10.1080/15332985.2012.664487CrossRef

Munn, Z., Peters, M. D. J., Stern, C., Tufanaru, C., McArthur, A., & Aromataris, E. (2018). Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Medical Research Methodology, 18, 143–143. https://doi.org/10.1186/s12874-018-0611-xCrossRefPubMedPubMedCentral

National Initiative for Autism: Screening and Assessment. (2003). National autism plan for children. The National Autistic Society.

National Institute for Health Care and Excellence. (2017). Autism spectrum disorder in under 19s: Recognition, referral and diagnoisis—Clinical guideline [128].

New York State Department of Health, Bureau of Early Intervention (2017). New York State Department of Health clinical practice guideline on assessment and intervention services for young children (Age 0–3) with autism spectrum disorders.

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, 30–43. https://doi.org/10.1177/108835760201700103CrossRef

Pelco, L. E., Ward, S. B., Coleman, L., & Young, J. (2009). Teacher ratings of three psychological report styles. Training and Education in Professional Psychology, 3, 19–27. https://doi.org/10.1037/1931-3918.3.1.19CrossRef

Penner, M., Anagnostou, E., Andoni, L. Y., & Ungar, W. J. (2018). Systematic review of clinical guidance documents for autism spectrum disorder diagnostic assessment in select regions. Autism, 22, 517–527CrossRef

Peters, M., Godfrey, C., McInerney, P., Munn, Z., Tricco, A. C., & Khalil, H. (2020). Chapter 11: Scoping reviews (2020 version). In E. Aromataris & Z. Munn (Eds.), JBI Manual for evidence synthesis.JBI.

Potter, C. A. (2017). “I received a leaflet and that is all”: Father experiences of a diagnosis of autism. British Journal of Learning Disabilities, 45, 95–105. https://doi.org/10.1111/bld.12179CrossRef

Rogers, C. L., Goddard, L., Hill, E. L., Henry, L. A., & Crane, L. (2016). Experiences of diagnosing autism spectrum disorder: A survey of professionals in the United Kingdom. Autism, 20, 820–831. https://doi.org/10.1177/1362361315611109CrossRefPubMed

Ruiz Calzada, L., Pistrang, N., & Mandy, W. (2012). High-functioning autism and asperger’s disorder: Utility and meaning for families. Journal of Autism and Developmental Disorders, 42, 230–243. https://doi.org/10.1007/s10803-011-1238-5CrossRefPubMed

Scottish Intercollegiate Guidelines Network (SIGN). (2016). Assessment, diagnosis and interventions for autism spectrum disorders SIGN Publication no 145. SIGN.

Sekercioglu, N., et al. (2017). A critical appraisal of chronic kidney disease mineral and bone disorders clinical practice guidelines using the AGREE II instrument. International Urology and Nephrology, 49, 273–284. https://doi.org/10.1007/s11255-016-1436-3CrossRefPubMed

Sheets, K. B., Best, R. G., Brasington, C. K., & Will, M. C. (2011). Balanced information about Down syndrome: What is essential? American Journal of Medical Genetics, 155, 1246–1257. https://doi.org/10.1002/ajmg.a.34018CrossRef

Siering, U., Eikermann, M., Hausner, E., Hoffmann-Esser, W., & Neugebauer, E. (2013). Appraisal tools for clinical practice guidelines: A systematic review. PLoS ONE. https://doi.org/10.1371/journal.pone.0082915CrossRefPubMedPubMedCentral

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 & Adolescent Psychiatry, 47, 921–929. https://doi.org/10.1097/CHI.0b013e318179964fCrossRef

Taylor, J., & Warren, Z. (2012). Maternal depressive symptoms following autism spectrum diagnosis. Journal of Autism and Developmental Disorders, 42, 1411–1418. https://doi.org/10.1007/s10803-011-1375-xCrossRefPubMed

Thompson Founation for Autism and the Division of Developmental Disabilities (2010). Autism spectrum disorders: Missouri best practice guidelines for screening, diagnosis, and assessment. Missouri Department of Mental Health.

Tricco, A. C., et al. (2018). PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Annals of Internal Medicine, 169, 467. https://doi.org/10.7326/M18-0850CrossRefPubMed

University of Connecticut School of Medicine and Dentistry. (2013). Connecticut guidelines for a clinical diagnosis of autism spectrum disorder Articles—Patient Care. vol 45.

Ure, A., Rose, V., Bernie, C., & Williams, K. (2018). Autism: One or many spectrums? Journal of Paediatrics and Child Health, 54, 1068–1072. https://doi.org/10.1111/jpc.14176CrossRefPubMed

Veritas Health Innovation. (2015). Covidence systematic review software. In. www.covidence.org.

Volkmar, F., Siegel, M., Woodbury-Smith, M., King, B., McCracken, J., & State, M. (2014). Practice parameter for the assessment and treatment of children and adolescents with autism spectrum disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 53, 237–257. https://doi.org/10.1016/j.jaac.2013.10.013CrossRef

Ward, S. L., Sullivan, K. A., & Gilmore, L. (2016). Practitioner perceptions of the assessment and diagnosis of autism in Australia. Australian Psychologist, 51, 272–279. https://doi.org/10.1111/ap.12211CrossRef

Whitehouse, A., Evans, K., Eapen, V., & Wray, A. (2018). A national guideline for the assessment and diagnosis of autism spectrum disorders in Australia. Cooperative Research Centre for Living with Autism.

Williams, K., Woolfenden, S., Roberts, J., Rodger, S., Bartak, L., & Prior, M. (2014). Autism in context 2: Assessment, intervention and services in Australia. Journal of Paediatrics and Child Health, 50, 341–346CrossRef

World Health Organization. (2007). The international classification of functioning, disability and health, children and youth. WHO.

World Health Organization. (2018). International classification of diseases for mortality and morbidity statistics (11^th Revision)

Wosik, J., et al. (2020). Telehealth transformation: COVID-19 and the rise of virtual care. Journal of the American Medical Informatics Association, 27, 957–962. https://doi.org/10.1093/jamia/ocaa067CrossRefPubMedPubMedCentral

Yan, J., Min, J., & Zhou, B. (2013). Diagnosis of pheochromocytoma: A clinical practice guideline appraisal using AGREE II instrument. Journal of Evaluation in Clinical Practice, 19, 626–632. https://doi.org/10.1111/j.1365-2753.2012.01873.xCrossRefPubMed

Titel: The Feedback Session of an Autism Assessment: A Scoping Review of Clinical Practice Guideline Recommendations
Auteurs: Ellen Pattison
Alexandra Ure
Sharon R. Mittiga
Katrina Williams
Nerelie C. Freeman
Publicatiedatum: 25-05-2021
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 4/2022
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-021-05067-9

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 4/2022

Improving Beverage Choice in Adults with Developmental Disabilities: Implementation of a Token Reinforcement System in a Community Residential Setting

Brief Report: Examining the Links Between Language Processes and Working Memory Impairments in Toddlers and Preschoolers with ASD

Community Participation Comparison Between Adults on the Autism Spectrum and Adults in the General Population

Brief Report: Medicaid Expansion and Growth in the Workforce for Autism Spectrum Disorder

Theory of Mind and Moral Decision-Making in the Context of Autism Spectrum Disorder

A Psychometric Evaluation of the Quality of Life for Children with Autism Spectrum Disorder Scale