Parental Conceptualizations of Autism and Deafness in British Deaf Children

Young, Alys; Ferguson-Coleman, Emma; Wright, Barry; Couteur, Ann Le

doi:10.1093/deafed/enz002

Cited by 12 publications

(17 citation statements)

References 28 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…They allow us to combine important information from parents about their child’s development with information from direct play and interaction with the child. These tools for ASD assessment can be available for use with deaf participants, and given the large struggles experienced by parents seeking assessment [ 33 ] and by assessing clinicians [ 6 ], this is a step forward. Whilst these assessments may be used in specialist centres, with deaf and hearing clinicians working together [ 17 ], this research has opened up new assessment possibilities.…”

Section: Discussionmentioning

confidence: 99%

Diagnosing Autism Spectrum Disorders in Deaf Children Using Two Standardised Assessment Instruments: The ADIR-Deaf Adaptation and the ADOS-2 Deaf Adaptation

Allgar

Wright

Taylor

et al. 2021

JCM

Self Cite

View full text Add to dashboard Cite

The aim was to investigate the agreement between the ADI-R Deaf adaptation and ADOS-2 Deaf adaptation overall diagnostic categorisation for autism (AUT) and a wider threshold to include autism spectrum (ASD) in a cohort of deaf children with and without ASD. We compared results of the instruments used on their own and when combined and propose standard criteria for the combined use of the ADI-R Deaf adaptation and ADOS-2 Deaf adaptation for use with deaf children. In total, 116 deaf children had a Gold standard NICE guideline assessment; 58 diagnosed with ASD and 58 without ASD, and for both groups a blinded informant based ADI-R Deaf adaptation and direct assessment using the ADOS-2 Deaf adaptation were separately completed. There was moderate agreement between the ADI-R Deaf adaptation and ADOS-2 Deaf adaptation for the wider threshold of ASD (Kappa, 0.433). To achieve the lowest number of false negatives, the most successful assessment tool approach is using the wider threshold of ASD with either ADI-R Deaf adaptation or ADOS-2-Deaf adaptation (95% sensitivity). This compares with 88% for the ADI-R Deaf adaptation alone and 74% for the ADOS-2-Deaf adaptation alone (wider threshold of ASD). To achieve a low number of false positives, the most successful assessment tool approach is a combination of ADI-R Deaf adaptation and ADOS-2- Deaf adaptation (using the narrow threshold of autism for both) (95% specificity). This compares with 83% for the ADI-R Deaf adaptation alone and 81% for the ADOS-2-Deaf adaptation (narrow threshold) alone. This combination is therefore recommended in specialist clinics for diagnostic assessment in deaf children.

show abstract

Section: Discussionmentioning

confidence: 99%

Diagnosing Autism Spectrum Disorders in Deaf Children Using Two Standardised Assessment Instruments: The ADIR-Deaf Adaptation and the ADOS-2 Deaf Adaptation

Allgar

Wright

Taylor

et al. 2021

JCM

Self Cite

View full text Add to dashboard Cite

show abstract

“…Recent research shows that families seeking an autism assessment for their deaf child often run into a range of problems accessing a good assessment and may experience long delays (Young et al, 2019). Clinicians feel under-skilled and unprepared to carry out such assessments (Brenman et al, 2014).…”

Section: Assessment For Asd As An Exemplarmentioning

confidence: 99%

Accessing good communication – Deaf children in a mental health assessment

2020

View full text Add to dashboard Cite

show abstract

“…There are concerns that diagnostic uncertainties such as these delay the assessment pathway (Brenman et al, 2017). Parents of deaf children experience delay in assessment and diagnosis, diagnostic uncertainty, lack of understanding of the deaf experience and problems establishing effective communication with the child from assessing clinicians (Roper et al, 2003; Wright & Oakes, 2012; Young et al, 2019).…”

Section: Introductionmentioning

confidence: 99%

“…These differences may be related to an overlap, confusion or misattribution of symptoms (Schick et al, 2007; Szymanski & Brice, 2008; Wright & Oakes, 2012). Most deaf children are born to hearing parents who are not expecting a deaf child (Vaccari & Marschark, 1997), and often seek information and advice (Szarkowski & Brice, 2016) and report challenging experiences when having to consider their understanding of the development of a child who is deaf or is deaf and has ASD (Young et al, 2019). Another contributory factor to delay may include a limited number of professionals with knowledge or experience in the assessment of deaf children with/or without suspected ASD (Shield et al, 2015; Szymanski et al, 2012).…”

Section: Introductionmentioning

confidence: 99%

Adapting and validating the Autism Diagnostic Interview - Revised for use with deaf children and young people

Wright

Phillips

Allgar

et al. 2021

Autism

Self Cite

View full text Add to dashboard Cite

A Delphi consensus methodology was used to adapt the Autism Diagnostic Interview–Revised for the assessment of deaf children with suspected autism spectrum disorder. Each Autism Diagnostic Interview–Revised item was considered by a panel of nine international experts in terms of relevance and acceptability. Modifications were proposed and agreed by the expert panel for 45% of items. The pre-specified criterion for agreement between experts was set at 80% for each item. A first validation of the revised version, adapted for deaf children (Autism Diagnostic Interview–Revised Deaf Adaptation), was undertaken with a UK sample of 78 parents/carers of deaf children with autism spectrum disorder and 126 parents/carers with deaf children without autism spectrum disorder. When compared to National Institute for Health and Care Excellence guideline standard clinical assessments, the Autism Diagnostic Interview–Revised Deaf Adaptation diagnostic algorithm cut-off/threshold scores achieved a sensitivity of 89% (79%–96%) and specificity of 81% (70%–89%) for autism spectrum disorder. The alpha coefficients for each algorithm symptom domain ranged from 0.80 to 0.91, suggesting that the items had high internal consistency. Our findings indicate that the Autism Diagnostic Interview–Revised Deaf Adaptation is likely to be a useful measure for the assessment of deaf children with suspected autism spectrum disorder, although further research is needed. Lay abstract Autism assessment processes need to improve for deaf children as they are currently being diagnosed later than their hearing counterparts and misdiagnosis can occur. We took one of the most commonly used parent developmental interviews for autism spectrum disorder the Autism Diagnostic Interview–Revised and adapted it using international expert advice. Modifications were proposed and agreed by the expert panel for 45% of items; the remaining 55% of items were unchanged. We then tested the revised version, adapted for deaf children (Autism Diagnostic Interview–Revised Deaf Adaptation), in a UK sample of 78 parents/carers of deaf children with autism spectrum disorder and 126 parents/carers with deaf children without autism spectrum disorder. When compared to National Institute for Health and Care Excellence guideline standard clinical assessments, the Autism Diagnostic Interview–Revised Deaf Adaptation diagnostic algorithm threshold scores could identify those deaf children with a definite diagnosis (true autism spectrum disorder positives) well (sensitivity of 89% (79%–96%)) and those deaf children who did not have autism spectrum disorder (true autism spectrum disorder negatives) well (specificity of 81% (70%–89%)). Our findings indicate that the Autism Diagnostic Interview–Revised Deaf Adaptation is likely to prove a useful measure for the assessment of deaf children with suspected autism spectrum disorder and that further research would be helpful.

show abstract

Parental Conceptualizations of Autism and Deafness in British Deaf Children

Cited by 12 publications

References 28 publications

Diagnosing Autism Spectrum Disorders in Deaf Children Using Two Standardised Assessment Instruments: The ADIR-Deaf Adaptation and the ADOS-2 Deaf Adaptation

Diagnosing Autism Spectrum Disorders in Deaf Children Using Two Standardised Assessment Instruments: The ADIR-Deaf Adaptation and the ADOS-2 Deaf Adaptation

Accessing good communication – Deaf children in a mental health assessment

Adapting and validating the Autism Diagnostic Interview - Revised for use with deaf children and young people

Contact Info

Product

Resources

About