An investigation of adherence to best practice guidelines for autism diagnosis in New Zealand

Abstract

Recent studies of autism diagnosis in New Zealand have revealed inconsistent implementation of best practice standards in autism assessment and high rates of parental dissatisfaction with the diagnostic process. These findings have arisen despite the development and dissemination of the New Zealand Autism Spectrum Disorder Guideline (the Guideline). In this study, we investigated current diagnostic processes, and adherence to the Guideline in New Zealand, for an opportunity sample of 117 health professionals who practice across a wide range of diagnostic services, health professionals and geographic regions in New Zealand. The results show considerable variability in practice, and suggest specific areas for improvement. These include the robustness of diagnostic evaluations conducted in private settings, the provision of specialist assessment services for youth and adults presenting for autism diagnosis, and the uniformity of post-diagnostic supports and services. These findings have implications for further implementation of the Guideline in New Zealand.

Lay abstract

Many clinicians in New Zealand do not follow guidelines for best practice in autism diagnosis. In this study, we investigated the processes that health professionals in New Zealand follow when diagnosing autistic children and adults. We asked 117 health professionals from a range of services and regions in New Zealand, how they identify and diagnose autism. We found that there are differences in the way that clinicians in New Zealand diagnose autism. We identified areas in which autism diagnosis in New Zealand could be improved, for example, by establishing more services to diagnose autism in adolescents and adults, and providing more consistent support after a person is diagnosed with autism. These findings will help to improve autism diagnosis in New Zealand.

Keywords

autism spectrum disorder clinical guidelines diagnosis implementation

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References

Crane

Batty

Adeyinka

Goddard

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(11), 3761–3772. https://doi.org/10.1007/s10803-018-3639-1

Crane

Chester

J. W.

Goddard

Henry

L. A.

Hill

E. L.

(2015). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism, 20(2), 153–162. https://doi.org/10.1177/1362361315573636

Crane

Davidson

Prosser

Pellicano

(2019). Understanding psychiatrists’ knowledge, attitudes and experiences in identifying and supporting their patients on the autism spectrum: Online survey. British Journal of Psychiatry Open, 5, Article e33. https://doi.org/10.1192/bjo.2019.12

Curry

(1998). Autism services in New Zealand. Autism Services Project Team.

Dorlack

T. P.

Myers

O. B.

Kodituwakku

P. W.

(2018). A comparative analysis of the ADOS-G and ADOS-2 algorithms: Preliminary findings. Journal of Autism and Developmental Disorders, 48, 2078–2089. https://doi.org/10.1007/s10803-018-3475-3

Edwards

P. J.

Roberts

Clarke

M. J.

DiGuiseppi

Wentz

Kwan

. . .Pratap

(2009). Methods to increase response to postal and electronic questionnaires. Cochrane Database of Systematic Reviews, 3, MR000008. https://doi.org/10.1002/14651858.MR000008.pub4

Eggleston

M. J. F.

Thabrew

Frampton

C. M. A.

Eggleston

K. H. F.

Hennig

S. C.

(2019). Obtaining an autism spectrum disorder diagnosis and supports: New Zealand parents’ experiences. Research in Autism Spectrum Disorders, 62, 18–25. https://doi.org/10.1016/j.rasd.2019.02.004

Fombonne

(2018). Editorial: The rising prevalence of autism. Journal of Child Psychology and Psychiatry, 59(7), 717–720. https://doi.org/10.1111/jcpp.12941

Gagliardi

A. R.

Brouwers

M. C.

Palda

V. A.

Lemieux-Charles

Grimshaw

J. M.

(2011). How can we improve guideline use? A conceptual framework of implementability. Implementation Science, 6(1), 26. https://doi.org/10.1186/1748-5908-6-26

10.

Grzadzinski

Dick

Lord

Bishop

(2016). Parent-reported and clinician-observed autism spectrum disorder (ASD) symptoms in children with attention deficit/hyperactivity disorder (ADHD): Implications for practice under DSM-5. Molecular Autism, 7, 7. https://doi.org/10.1186/s13229-016-0072-1

11.

Howlin

Moore

(1997). Diagnosis in autism: A survey of over 1200 patients in the UK. Autism, 1(2), 135–162. https://doi.org/10.1177/1362361397012003

12.

Huerta

Lord

(2012). Diagnostic evaluation of autism spectrum disorders. Pediatric Clinics of North America, 59(1), 103–111. https://doi.org/10.1016/j.pcl.2011.10.018

13.

Hyman

S. L.

Levy

S. E.

Myers

S. M.

(2020). Identification, evaluation, and management of children with autism spectrum disorder. Pediatrics, 145(1), Article e20193447. https://doi.org/10.1542/peds.2019-3447

14.

Jeste

S. S.

Geschwind

D. H.

(2014). Disentangling the heterogeneity of autism spectrum disorder through genetic findings. Nature Reviews Neurology, 10, 74–81.

15.

Jones

Goddard

Hill

E. L.

Henry

L. A.

Crane

(2014). Experiences of receiving a diagnosis of autism spectrum disorder: A survey of adults in the United Kingdom. Journal of Autism and Developmental Disorders, 44(12), 3033–3044. https://doi.org/10.1007/s10803-014-2161-3

16.

Lai

M.-C.

Baron-Cohen

Buxbaum

J. D.

(2015). Understanding autism in the light of sex/gender. Molecular Autism, 6, 24. https://doi.org/10.1186/s13229-015-0021-4

17.

Lebersfeld

J. B.

Swanson

M. R.

Clesi

C. D.

O’Kelley

(2021). Systematic review and meta-analysis of the clinical utility of the ADOS-2 and the ADI-R in diagnosing autism spectrum disorders in children. Journal of Autism and Developmental Disorders. Advance online publication. https://doi.org/10.1007/s10803-020-04839-z

18.

Lombardo

M. V.

Lai

Baron-Cohen

(2019). Big data approaches to decomposing heterogeneity across the autism spectrum. Molecular Psychiatry, 24(10), 1435–1450. https://doi.org/10.1038/s41380-018-0321-0

19.

Loomes

Hull

Mandy

(2017). What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. Journal of the American Academy of Child & Adolescent Psychiatry, 56(6), 466–474. https://doi.org/10.1016/j.jaac.2017.03.013

20.

Maddox

B. B.

Brodkin

E. S.

Calkins

M. E.

Shea

Mullan

Hostager

. . .Miller

J. S.

(2017). The accuracy of the ADOS-2 in identifying autism among adults with complex psychiatric conditions. Journal of Autism and Developmental Disorders, 47, 2703–2709. https://doi.org/10.1007/s10803-017-3188-z

21.

Mandy

Chilvers

Chowdhury

Salter

Seigal

Skuse

(2012). Sex differences in autism spectrum disorder: Evidence from a large sample of children and adolescents. Journal of Autism and Developmental Disorders, 42(7), 1304–1313. https://doi.org/10.1007/s10803-011-1356-0

22.

Martin

B. C.

(1974). Don’t survey physicians! American Medical Association.

23.

Masi

DeMayo

M. M.

Glozier

Guastella

A. J.

(2017). An overview of autism spectrum disorder, heterogeneity and treatment options. Neuroscience Bulletin, 33(2), 183–193. https://doi.org/10.1007/s12264-017-0100-y

24.

Mazefsky

C. A.

Oswald

D. P.

Day

T. N.

Eack

S. M.

Minshew

N. J.

Lainhart

J. E.

(2012). ASD, a psychiatric disorder, or both? Psychiatric diagnoses in adolescents with high-functioning ASD. Journal of Clinical Child and Adolescent Psychology, 41(4), 516–523. https://doi.org/10.1080/15374416.2012.686102

25.

Ministries of Health and Education. (2016). New Zealand autism spectrum disorder guideline (2nd ed.). https://www.health.govt.nz/publication/new-zealand-autism-spectrum-disorder-guideline

26.

Ministries of Health and Education. (2019, November 21). Living guideline group: Keeping the ASD guideline up to date. https://www.health.govt.nz/our-work/disability-services/disability-projects/autism-spectrum-disorder-guideline/living-guideline-group-keeping-asd-guideline-date

27.

Murphy

C. M.

Wilson

C. E.

Robertson

D. M.

Ecker

Daly

E. M.

Hammond

. . .McAlonan

G. M.

(2016). Autism spectrum disorder in adults: Diagnosis, management, and health services development. Neuropsychiatric Disease and Treatment, 12, 1669–1686.

28.

National Institute for Health and Care Excellence. (2013). Autism: The nice guideline on the management and support of children and young people on the autism spectrum.

29.

National Institute for Health and Care Excellence. (2016). Autism spectrum disorder in adults: Diagnosis and management (NICE Clinical Guideline CG142). https://www.nice.org.uk/guidance/cg142

30.

Randall

Albein-Urios

Brignell

Gulenc

Hennel

Coates

. . .Williams

(2016). Diagnosing autism: Australian paediatric research network surveys. Journal of Paediatrics and Child Health, 52(1), 11–17. https://doi.org/10.1111/jpc.13029

31.

Randall

Egberts

K. J.

Samtani

Scholten

Hooft

Livingstone

. . .Williams

(2018). Diagnostic tests for autism spectrum disorder (ASD) in preschool children. Cochrane Database of Systematic Reviews, 7, CD009044. https://doi.org/10.1002/14651858.CD009044.pub2

32.

Rhoades

R. A.

Scarpa

Salley

(2007). The importance of physician knowledge of autism spectrum disorder: Results of a parent survey. BMC Pediatrics, 7(1), Article 37. https://doi.org/10.1186/1471-2431-7-37

33.

Rogers

C. L.

Goddard

Hill

E. L.

Henry

L. A.

Crane

(2015). Experiences of diagnosing autism spectrum disorder: A survey of professionals in the United Kingdom. Autism, 20(7), 820–831. https://doi.org/10.1177/1362361315611109

34.

Rutherford

McKenzie

McClure

Forsyth

O’Hare

McCartney

Finlayson

(2016). A national study to investigate the clinical use of standardised instruments in autism spectrum disorder assessment of children and adults in Scotland. Research in Autism Spectrum Disorders, 29–30, 93–100. https://doi.org/10.1016/j.rasd.2016.05.003

35.

Scattoni

M. L.

Micai

Ciaramella

Salvitti

Fulceri

Fatta

L. M.

. . .Schendel

(2021). Real-world experiences in autistic adult diagnostic services and post-diagnostic support and alignment with services guidelines: Results from the ASDEU study. Journal of Autism and Developmental Disorders. Advance online publication. https://doi.org/10.1007/s10803-021-04873-5

36.

Schwartz

Drager

K. D. R.

(2008). Training and knowledge in autism among speech-language pathologists: A survey. Language, Speech, and Hearing Services in Schools, 39(1), 66–77. https://doi.org/10.1044/0161-1461(2008/007)

37.

Skellern

McDowell

Schluter

(2005). Diagnosis of autistic spectrum disorders in Queensland: Variations in practice. Journal of Paediatrics and Child Health, 41(8), 413–418. https://doi.org/10.1111/j.1440-1754.2005.00667.x

38.

Subramanyam

A. A.

Mukherjee

Dave

Chavda

(2019). Clinical practice guidelines for autism spectrum disorders. Indian Journal of Psychiatry, 61(Suppl. 2), 254–269. https://doi.org/10.4103/psychiatry.IndianJPsychiatry_542_18

39.

Taylor

L. J.

Eapen

Maybery

Midford

Paynter

Quarmby

. . .Whitehouse

A. J. O.

(2017). Brief report: An exploratory study of the diagnostic reliability for autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(5), 1551–1558. https://doi.org/10.1007/s10803-017-3054-z

40.

Taylor

L. J.

Eapen

Maybery

M. T.

Midford

Paynter

Quarmby

. . .Whitehouse

A. J. O.

(2016). Diagnostic evaluation for autism spectrum disorder: A survey of health professionals in Australia. BMJ Open, 6(9), Article e012517. https://doi.org/10.1136/bmjopen-2016-012517

41.

Thabrew

Eggleston

(2018). Spectrum of care: Current management of childhood autism spectrum disorder (ASD) in New Zealand. Australasian Psychiatry, 26(3), 294–298. https://doi.org/10.1177/1039856217716290

42.

Ward

S. L.

Sullivan

K. A.

Gilmore

(2016). Practitioner perceptions of the assessment and diagnosis of autism in Australia. Australian Psychologist, 51(4), 272–279. https://doi.org/10.1111/ap.12211

43.

Whitehouse

A. J. O.

Evans

Eapen

Wray

(2018). A national guideline for the assessment and diagnosis of autism spectrum disorders in Australia. Cooperative Research Centre for Living with Autism.

44.

Woolfenden

Sarkozy

Ridley

Williams

(2012). A systematic review of the diagnostic stability of autism spectrum disorder. Research in Autism Spectrum Disorders, 6(1), 345–354. https://doi.org/10.1016/j.rasd.2011.06.008

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