Assessment of Autism Spectrum Disorder in Deaf Adults with Intellectual Disability: Feasibility and Psychometric Properties of an Adapted Version of the Autism Diagnostic Observation Schedule (ADOS-2)

Andrews, R., & Wyver, S. (2005). Autistic tendencies: Are there different pathways for blindness and autism spectrum disorder? British Journal of Visual Impairment, 23(2), 52–57. https://doi.org/10.1177/0264619605054776 American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders: DSM-5. American Psychiatric Association. https://doi.org/10.1176/appi.books.9780890425596 Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., Kurzius-Spencer, M., Zahorodny, W., Robinson Rosenberg, C., White, T., Durkin, M. S., Imm, P., Nikolaou, L., Yeargin-Allsopp, M., Lee, L. C., Harrington, R., Lopez, M., Fitzgerald, R. T., Hewitt, A.,…Dowling, N. F. (2018). Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 Sites, United States, 2014. Morbidity and Mortality Weekly Report. Surveillance Summaries (Washington, D.C. : 2002), 67(6), 1–23. https://doi.org/10.15585/mmwr.ss6706a1 Bal, V. H., Maye, M., Salzman, E., Huerta, M., Pepa, L., Risi, S., & Lord, C. (2020). The adapted ADOS: A new module set for the assessment of minimally verbal adolescents and adults. Journal of Autism and Developmental Disorders, 50(3), 719–729. https://doi.org/10.1007/s10803-019-04302-8 Baron-Cohen, S., Scott, F. J., Allison, C., Williams, J., Bolton, P., Matthews, F. E., & Brayne, C. (2009). Prevalence of autism-spectrum conditions: UK school-based population study. The British Journal of Psychiatry: The Journal of Mental Science, 194(6), 500–509. https://doi.org/10.1192/bjp.bp.108.059345 Bergmann, T., Heinrich, M., Ziegler, M., Dziobek, I., Diefenbacher, A., & Sappok, T. (2019). Developing a diagnostic algorithm for the Music-Based Scale for Autism Diagnostics (MUSAD) assessing adults with intellectual disability. Journal of Autism and Developmental Disorders, 49(9), 3732–3752. https://doi.org/10.1007/s10803-019-04069-y Berument, S. K., Starr, E., Pickles, A., Tomlins, M., Papanikolauou, K., Lord, C., & Rutter, M. (2005). Pre-linguistic autism diagnostic observation schedule adapted for older individuals with severe to profound mental retardation: A pilot study. Journal of Autism and Developmental Disorders, 35(6), 821–829. https://doi.org/10.1007/s10803-005-0027-4 Bölte, S., & Poustka, F. (2004). Diagnostische Beobachtungsskala für Autistische Störungen (ADOS): Erste Ergebnisse zur Zuverlässigkeit und Gültigkeit [Diagnostic Observation Scale for Autistic Disorders: Initial results of reliability and validity]. Zeitschrift Fur Kinder- Und Jugendpsychiatrie Und Psychotherapie, 32(1), 45–50. https://doi.org/10.1024/1422-4917.32.1.45 Bowen, D. J., Kreuter, M., Spring, B., Cofta-Woerpel, L., Linnan, L., Weiner, D., Bakken, S., Kaplan, C. P., Squiers, L., Fabrizio, C., & Fernandez, M. (2009). How we design feasibility studies. American Journal of Preventive Medicine, 36(5), 452–457. https://doi.org/10.1016/j.amepre.2009.02.002 Carvill, S. (2001). Sensory impairments, intellectual disability and psychiatry. Journal of Intellectual Disability Research: JIDR, 45(Pt 6), 467–483. https://doi.org/10.1046/j.1365-2788.2001.00366.x Cupples, L., Ching, T. Y., Button, L., Seeto, M., Zhang, V., Whitfield, J., Gunnourie, M., Martin, L., & Marnane, V. (2018). Spoken language and everyday functioning in 5-year-old children using hearing aids or cochlear implants. International Journal of Audiology, 57(sup2), S55–S69. https://doi.org/10.1080/14992027.2017.1370140 Dachkovsky, S., & Sandler, W. (2009). Visual intonation in the prosody of a sign language. Language and Speech, 52(Pt 2–3), 287–314. https://doi.org/10.1177/0023830909103175 de Bildt, A., Sytema, S., van Lang, N. D., Minderaa, R. B., van Engeland, H., & de Jonge, M. V. (2009). Evaluation of the ADOS revised algorithm: The applicability in 558 Dutch children and adolescents. Journal of Autism and Developmental Disorders, 39(9), 1350–1358. https://doi.org/10.1007/s10803-009-0749-9 Donno, R., Parker, G., Gilmour, J., & Skuse, D. H. (2010). Social communication deficits in disruptive primary-school children. The British Journal of Psychiatry: The Journal of Mental Science, 196(4), 282–289. https://doi.org/10.1192/bjp.bp.108.061341 Fellinger, J., Holzinger, D., & Pollard, R. (2012). Mental health of deaf people. Lancet (london, England), 379(9820), 1037–1044. https://doi.org/10.1016/S0140-6736(11)61143-4 Gallaudet Research Institute. (2011). Regional and national summary report of data from the 2009–10 annual survey of deaf and hard of hearing children and youth. Gallaudet University GRI. Gamer, M., Lemon, J., Fellows, I., & Singh, P. (2012). Various coefficients for interrater reliability and agreement. R package ver. 0.84. https://CRAN.R-project.org/package=irr Gisev, N., Bell, J. S., & Chen, T. F. (2013). Interrater agreement and interrater reliability: Key concepts, approaches, and applications. Research in Social & Administrative Pharmacy, 9(3), 330–338. https://doi.org/10.1016/j.sapharm.2012.04.004 Gotham, K., Risi, S., Dawson, G., Tager-Flusberg, H., Joseph, R., Carter, A., Hepburn, S., McMahon, W., Rodier, P., Hyman, S. L., Sigman, M., Rogers, S., Landa, R., Spence, M. A., Osann, K., Flodman, P., Volkmar, F., Hollander, E., Buxbaum, J.,…Lord, C. (2008). A replication of the autism diagnostic observation schedule (ADOS) revised algorithms. Journal of the American Academy of Child and Adolescent Psychiatry, 47(6), 642–651. https://doi.org/10.1097/CHI.0b013e31816bffb7 Gotham, K., Risi, S., Pickles, A., & Lord, C. (2007). The autism diagnostic observation schedule: Revised algorithms for improved diagnostic validity. Journal of Autism and Developmental Disorders, 37(4), 613–627. https://doi.org/10.1007/s10803-006-0280-1 Guthrie, W., Swineford, L. B., Nottke, C., & Wetherby, A. M. (2013). Early diagnosis of autism spectrum disorder: Stability and change in clinical diagnosis and symptom presentation. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 54(5), 582–590. https://doi.org/10.1111/jcpp.12008 Hoevenaars-van den Boom, M. A., Antonissen, A. C., Knoors, H., & Vervloed, M. P. (2009). Differentiating characteristics of deafblindness and autism in people with congenital deafblindness and profound intellectual disability. Journal of Intellectual Disability Research: JIDR, 53(6), 548–558. https://doi.org/10.1111/j.1365-2788.2009.01175.x Hofer, J., Tillmann, J., Salzmann, J., Bölte, S. , Fellinger, J., & Holzinger, D. (2021). Screening for autism spectrum disorder in deaf adults with intellectual disability: feasibility and accuracy of two autism screening instruments. Journal of Autism and Developmental Disorders (submitted). Holzinger, D., Weishaupt, A., Fellinger, P., Beitel, C., & Fellinger, J. (2016). Prevalence of 2.2 per mille of significant hearing loss at school age suggests rescreening after NHS. International Journal of Pediatric Otorhinolaryngology, 87, 121–125. https://doi.org/10.1016/j.ijporl.2016.06.006 Im-Bolter, N., Johnson, J., & Pascual-Leone, J. (2006). Processing limitations in children with specific language impairment: The role of executive function. Child Development, 77(6), 1822–1841. https://doi.org/10.1111/j.1467-8624.2006.00976.x Jeste, S. S., & Geschwind, D. H. (2014). Disentangling the heterogeneity of autism spectrum disorder through genetic findings. Nature Reviews Neurology, 10(2), 74–81. https://doi.org/10.1038/nrneurol.2013.278 Jure, R., Rapin, I., & Tuchman, R. F. (1991). Hearing-impaired autistic children. Developmental Medicine & Child Neurology, 33(12), 1062–1072. https://doi.org/10.1111/j.1469-8749.1991.tb14828.x Kalatzis, V., & Petit, C. (1998). The fundamental and medical impacts of recent progress in research on hereditary hearing loss. Human Molecular Genetics, 7(10), 1589–1597. https://doi.org/10.1093/hmg/7.10.1589 Kim, S. H., & Lord, C. (2012). Combining information from multiple sources for the diagnosis of autism spectrum disorders for toddlers and young preschoolers from 12 to 47 months of age. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 53(2), 143–151. https://doi.org/10.1111/j.1469-7610.2011.02458.x Koo, T. K., & Li, M. Y. (2016). A guideline of selecting and reporting intraclass correlation coefficients for reliability research. Journal of Chiropractic Medicine, 15(2), 155–163. https://doi.org/10.1016/j.jcm.2016.02.012 Kraijer, D., & de Bildt, A. (2005). The PDD-MRS: An instrument for identification of autism spectrum disorders in persons with mental retardation. Journal of Autism and Developmental Disorders, 35(4), 499–513. https://doi.org/10.1007/s10803-005-5040-0 Lord, C., Rutter, M., DiLavore, P., Risi, S., Gotham, K., & Bishop, S. (2012). Autism diagnostic observation schedule–2nd edition (ADOS-2). Los Angeles, CA: Western Psychological Corporation. https://doi.org/10.1177/0734282913490916 Maddox, B. B., Brodkin, E. S., Calkins, M. E., Shea, K., Mullan, K., Hostager, J., Mandell, D. S., & 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(9), 2703–2709. https://doi.org/10.1007/s10803-017-3188-z Minter, M. E., Hobson, R. P., & Pring, L. (1991). Recognition of vocally expressed emotion by congenitally blind children. Journal of Visual Impairment and Blindness, 85, 411–415. Molinaro, A., Micheletti, S., Rossi, A., Gitti, F., Galli, J., Merabet, L. B., & Fazzi, E. M. (2020). Autistic-like features in visually impaired children: A review of literature and directions for future research. Brain Sciences, 10(8), 507. https://doi.org/10.3390/brainsci10080507 Mood, D., & Shield, A. (2014). Clinical use of the autism diagnostic observation schedule-second edition with children who are deaf. Seminars in Speech and Language, 35(4), 288–300. https://doi.org/10.1055/s-0034-1389101 Morrier, M. J., Ousley, O. Y., Caceres-Gamundi, G. A., Segall, M. J., Cubells, J. F., Young, L. J., & Andari, E. (2017). Brief report: Relationship between ADOS-2, module 4 Calibrated Severity Scores (CSS) and social and non-social standardized assessment measures in adult males with autism spectrum disorder (ASD). Journal of Autism and Developmental Disorders, 47(12), 4018–4024. https://doi.org/10.1007/s10803-017-3293-z National Collaborating Centre for Mental Health (UK). (2012). Autism: Recognition, referral, diagnosis and management of adults on the autism spectrum. British Psychological Society. Newport, E. L., & Meier, R. P. (1985). The acquisition of American sign language. In D. I. Slobin (Ed.), The crosslinguistic study of language acquisition, Vol. 1. The data; Vol. 2. Theoretical issues (pp. 881–938). Lawrence Erlbaum Associates, Inc. Polyak, A., Kubina, R. M., & Girirajan, S. (2015). Comorbidity of intellectual disability confounds ascertainment of autism: implications for genetic diagnosis. American Journal of Medical Genetics Part B, Neuropsychiatric Genetics, 168(7), 600–608. https://doi.org/10.1002/ajmg.b.32338 Risi, S., Lord, C., Gotham, K., Corsello, C., Chrysler, C., Szatmari, P., Cook, E. H., Jr., Leventhal, B. L., & Pickles, A. (2006). Combining information from multiple sources in the diagnosis of autism spectrum disorders. Journal of the American Academy of Child and Adolescent Psychiatry, 45(9), 1094–1103. https://doi.org/10.1097/01.chi.0000227880.42780.0e Rogers, S. J., & Puchalski, C. B. (1986). Social smiles of visually impaired infants. Journal of Visual Impairment and Blindness, 80, 863–865. Rosenhall, U., Nordin, V., Sandström, M., Ahlsén, G., & Gillberg, C. (1999). Autism and hearing loss. Journal of Autism and Developmental Disorders, 29(5), 349–357. https://doi.org/10.1023/a:1023022709710 Russell, G., Mandy, W., Elliott, D., White, R., Pittwood, T., & Ford, T. (2019). Selection bias on intellectual ability in autism research: A cross-sectional review and meta-analysis. Molecular Autism, 10, 9. https://doi.org/10.1186/s13229-019-0260-x Rutter, M., LeCouteur, A., & Lord, C. (2003). The autism diagnostic interview-revised. Los Angeles, CA: Western Psychological Services, 24, 659–685. Rydzewska, E., Hughes-McCormack, L. A., Gillberg, C., Henderson, A., MacIntyre, C., Rintoul, J., & Cooper, S. A. (2019). Age at identification, prevalence and general health of children with autism: Observational study of a whole country population. British Medical Journal Open, 9(7), e025904. https://doi.org/10.1136/bmjopen-2018-025904 Sappok, T., Diefenbacher, A., Budczies, J., Schade, C., Grubich, C., Bergmann, T., Bölte, S., & Dziobek, I. (2013). Diagnosing autism in a clinical sample of adults with intellectual disabilities: How useful are the ADOS and the ADI-R? Research in Developmental Disabilities, 34(5), 1642–1655. https://doi.org/10.1016/j.ridd.2013.01.028 Satterfield-Nash, A., Umrigar, A., & Lanzieri, T. M. (2020). Etiology of prelingual hearing loss in the universal newborn hearing screening era: A scoping review. Otolaryngology–Head and Neck Surgery, 163(4), 662–670. https://doi.org/10.1177/0194599820921870 Shefer, G., Henderson, C., Howard, L. M., Murray, J., & Thornicroft, G. (2014). Diagnostic overshadowing and other challenges involved in the diagnostic process of patients with mental illness who present in emergency departments with physical symptoms–a qualitative study. PLoS ONE, 9(11), e111682. https://doi.org/10.1371/journal.pone.0111682 Stedman, A., Taylor, B., Erard, M., Peura, C., & Siegel, M. (2019). Are children severely affected by autism spectrum disorder underrepresented in treatment studies? An analysis of the literature. Journal of Autism and Developmental Disorders, 49(4), 1378–1390. https://doi.org/10.1007/s10803-018-3844-y Stevenson, J., McCann, D., Watkin, P., Worsfold, S., Kennedy, C., & Hearing Outcomes Study Team. (2010). The relationship between language development and behaviour problems in children with hearing loss. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 51(1), 77–83. https://doi.org/10.1111/j.1469-7610.2009.02124.x Szymanski, C. A., Brice, P. J., Lam, K. H., & Hotto, S. A. (2012). Deaf children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(10), 2027–2037. https://doi.org/10.1007/s10803-012-1452-9 Tellegen, P. J., & Laros, J. A. (2007). SON-R 2 ½ - 7. Nonverbaler intelligenztest. Hogrefe. Tellegen, P. J., Laros, J. A., & Petermann, F. (2012). SON-R 6-40. Nonverbaler intelligenztest. Hogrefe. Thurm, A., Farmer, C., Salzman, E., Lord, C., & Bishop, S. (2019). State of the field: Differentiating intellectual disability from autism spectrum disorder. Frontiers in Psychiatry, 10, 526. https://doi.org/10.3389/fpsyt.2019.00526 Tillmann, J., Ashwood, K., Absoud, M., Bölte, S., Bonnet-Brilhault, F., Buitelaar, J. K., Calderoni, S., Calvo, R., Canal-Bedia, R., Canitano, R., De Bildt, A., Gomot, M., Hoekstra, P. J., Kaale, A., McConachie, H., Murphy, D. G., Narzisi, A., Oosterling, I., Pejovic-Milovancevic, M.,…Charman, T. (2018). Evaluating sex and age differences in ADI-R and ADOS scores in a large European multi-site sample of individuals with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(7), 2490–2505. https://doi.org/10.1007/s10803-018-3510-4 Van Naarden Braun, K., Christensen, D., Doernberg, N., Schieve, L., Rice, C., Wiggins, L., Schendel, D., & Yeargin-Allsopp, M. (2015). Trends in the prevalence of autism spectrum disorder, cerebral palsy, hearing loss, intellectual disability, and vision impairment, metropolitan atlanta, 1991–2010. PLoS ONE, 10(4), e0124120. https://doi.org/10.1371/journal.pone.0124120 Volkmar, F., Siegel, M., Woodbury-Smith, M., King, B., McCracken, J., State, M., & American Academy of Child and Adolescent Psychiatry (AACAP) Committee on Quality Issues (CQI). (2014). Practice parameter for the assessment and treatment of children and adolescents with autism spectrum disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 53(2), 237–257. https://doi.org/10.1016/j.jaac.2013.10.013 Zafeiriou, D. I., Vargiami, E., Mayapetek, E., Augoustidou-Savvopoulou, P., & Mitchell, G. A. (2007). 3-hydroxy-3-methylglutaryl coenzyme a lyase deficiency with reversible white matter changes after treatment. Pediatric Neurology, 37(1), 47–50. https://doi.org/10.1016/j.pediatrneurol.2007.02.007 Zander, E., Sturm, H., & Bölte, S. (2015). The added value of the combined use of the autism diagnostic interview-revised and the autism diagnostic observation schedule: Diagnostic validity in a clinical Swedish sample of toddlers and young preschoolers. Autism: The International Journal of Research and Practice, 19(2), 187–199. https://doi.org/10.1177/1362361313516199 Zander, E., Willfors, C., Berggren, S., Choque-Olsson, N., Coco, C., Elmund, A., Moretti, Å. H., Holm, A., Jifält, I., Kosieradzki, R., Linder, J., Nordin, V., Olafsdottir, K., Poltrago, L., & Bölte, S. (2016). The objectivity of the autism diagnostic observation schedule (ADOS) in naturalistic clinical settings. European Child & Adolescent Psychiatry, 25(7), 769–780. https://doi.org/10.1007/s00787-015-0793-2