Discrepancy Between Parent Report and Clinician Observation of Symptoms in Children With Autism Spectrum Disorders

By Maria Lemler
Discussions
2012, Vol. 8 No. 2 | pg. 3/3 |

Analyses and Results

The three domains from the ADI-R were compared with matching domains from the ADOS. Z-scores were created for each domain for ADOS Communication and ADIR Communication, ADOS Interests and ADI-R Interests, ADOS Social and ADI-R Social and were compared. A paired t-test showed no significant differences on these items. Correlations showed no significant relationships between the items for the domains.

Twelve items from the ADOS and ADI-R were directly comparable. These items were coded for endorsement, if the behavior was marked as present (a response of 1, 2, or 3 on the ADI-R or the ADOS) the item was coded as "1," if not present (a response of 0 on the ADI-R or the ADOS) the item was coded as "0." Table 1 shows the items that could be directly compared were: Range of facial expressions used to communicate, Quality of social overtures, Appropriateness of social response, Conventional or instrumental gestures, Social verbalization or chat, Reciprocal Conversation, Neologisms or idiosyncratic language, Unusual preoccupations or circumscribed interests, Compulsions and rituals, Hand and finger mannerisms, Unusual sensory interests, and Seeking to share enjoyment with others.

Percent agreement between parent responses on ADI-R items and the comparable items on the ADI-R was calculated using the codes for endorsement. Only 3 items (Conversation 91.7%, Quality of social response 75%, Gesture 75%) showed an agreement of 75% or more of the participants. In contrast, 5 items showed agreement 50% or less of the time, these were Chat at 50%, Compulsions 45.5%, Unusual sensory interests 41.7%, Excessive/unusual interests or preoccupations 33.3%, and Quality of social overture 25% (Table 2). The five items fall in all three domains of ASD. The item in the communication domain, Chat, and the item in the social domain, Quality of social overture, showed more endorsement, meaning the behavior was more often present by the clinician on the ADOS. In the domain of restricted interest and stereotypies parents consistently endorsed the items, Unusual sensory interests, Excessive or unusual interests or preoccupations, and Compulsions more often (See Table 3).

Discussion

At this time the ADOS and the ADI-R are the most comprehensive diagnostic assessments for ASD. Presently they are not required for an official diagnosis of ASD and are not consistently used by clinicians in the process of diagnosis. Given that they are not both required for diagnosis, schools, therapeutic services and other intervention services are receiving only partial information, most often just parent report information, like that of the ADI-R. One study (Pilowsky, Yirmiya, Shulman, & Dover, 1998) reported that the Childhood Autism Rating Scale (Cars: Schopler, Reichler, De Vellis, & Daly 1980; Schopler, Reichler, & Renner, 1998) and the ADI-R disagree and this could be due to the source of information and time and place limits on both measures.

Results indicate that there is a difference between parent and clinician reports of symptoms in children with ASD. As hypothesized, parents reported their child as having more behaviors in the domain of restricted interests and stereotypies and clinicians reported more behaviors in the social and communication domains. These results suggest that parents and clinicians are both missing information when they report symptoms. Clinicians are not seeing all the restricted interests and behaviors while parents are not seeing the social and communication challenges.

These results can be due to a number of differences in relationships clinicians have with the child with ASD and parents have with their child, and further research should investigate these differences and their causes. One of the causes of the discrepancy is that parents don't see their child in school or group therapy sessions so they may think their child is more social. One Explanation for parents saying their child has stronger communication may be that parents often learn their children's idioms, i.e. "wa wa" meaning water, and can understand their child's speech best because they are present for every step of development.

The discrepancy between parent report on the ADI-R and clinician observation on the ADOS in the domains of Communication, Social and Interests will help clinicians in diagnosis, school and therapy settings, and describe parent perspective versus that of an objective clinician. By investigating the domains, on the ADI-R and the ADOS, crucial detail is provided on the child with ASD's abilities, symptoms, and needs. In the future, the study could be expanded with more participants, which could provide for more generalizable data. A limitation is that even though we are able to convert the data from the ADIR to the ADOS metrics they aren't on the exact scale as the original scores.

Further research could study specific tasks or questions within those domains, i.e. social reciprocity, with parents and clinicians. This research creates a greater body of literature on parent knowledge and clinician evaluation abilities. Future research could also compare ages, spectrum diagnosis and level of functioning of the children and the agreement on these domains between the ADIR and the ADOS. It is expected that with increasing age agreement will also increase. This could be due to the parents having knowledge of their child's diagnosis and having spoken with experts in the school system or intervention services. In regard to the level of functioning, if a parent has been told over the years that their child is "low" or "high-functioning" this information may impact how they analyze their child's behavior in response to the questions in the ADI-R. Clinicians who administer assessments themselves may not be impacted by previous assessments but may also spend a limited amount of time with the child as compared to the parents.

By investigating the three criteria of ASD and determining where a discrepancy between parent and clinical report lies, policy could be created regarding which tests should be required in order to gain the most comprehensive assessment of the needs of a child with ASD. [transition word] Future policy and programs could be created to educate parents on how to better understand and analyze their child's behavior. Also, physicians and psychologists who perform the diagnosis could hold greater value in certain information that the parents provide. As so much development occurs during the ages that children with ASD begin showing symptoms and are diagnosed, early intervention is crucial. This research could be the basis for future policy which would require both the ADOS and the ADI-R for a diagnosis and children receiving early intervention services, already provided by the state, that are most appropriate for their individual needs and they could receive specific intervention based on a comprehensive diagnosis when they need it the most.


Acknowledgements

I would like to thank Dr. Anastasia Dimitropoulos, adviser for this project and head of the Neurodevelopment Research Lab at Case Western Reserve University. This research was funding through the NIH (RO3HD058766-01) and the PraderWilli Syndrome Association of America (PWSA).


References

3, By Age. "NIMH - Autism Spectrum Disorders (Pervasive Developmental Disorders)." NIMH - Home. 24 Aug. 2010. Web. 25 Sept. 2010.

Achenbach, T. M., & Ruffle, T. M. (2000). The child behavior checklist and related forms for assessing behavioral/ emotional problems and competencies. Pediatrics in Review / American Academy of Pediatrics, 21(8), 265-271.

Allison Bender, H., Auciello, D., Morrison, C. E., MacAllister, W. S., & Zaroff, C. M. (2008). Comparing the convergent validity and clinical utility of the behavior assessment system for children-parent rating scales and child behavior checklist in children with epilepsy. Epilepsy & Behavior : E&B, 13(1), 237-242. doi:10.1016/j.yebeh.2008.03.007

Altman, D. (1981). Statistics and ethics in medical research. VIII-Improving the quality of statistics in medical journals. British medical journal (Clinical research ed.), 282(6257), 44-47. doi:10.1136/bmj.282.6257.44

American Psychiatric Association, Diagnostic and statistical manual of mental disorders (Revised 4th ed.). Washington D.C.

Bishop, D. V., & Baird, G. (2001). Parent and teacher report of pragmatic aspects of communication: Use of the children's communication checklist in a clinical setting. Developmental Medicine and Child Neurology, 43(12), 809-818.

Bishop, D. V., & Norbury, C. F. (2002). Exploring the borderlands of autistic disorder and specific language impairment: A study using standardised diagnostic instruments. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 43(7), 917-929.

"CDC Autism Spectrum Disorder (ASDs) NCBDDD." Centers for Disease Control and Prevention. 24 June 2010. Web. 26 Sept. 2010.

Charman, T., Taylor, E., Drew, A., Cockerill, H., Brown, J., & Baird, G. (2005). Outcome at 7 years of children diagnosed with autism at age 2: Predictive validity of assessments conducted at 2 and 3 years of age and pattern of symptom change over time. Journal of Child Psychology and Psychiatry, 46(5), 500-513. doi:10.1111/ j.1469-7610.2004.00377.x

Cicchetti, D. V. (2001). The precision of reliability and validity estimates re-visited: Distinguishing between clinical and statistical significance of sample size requirements. Journal of Clinical and Experimental Neuropsychology, 23, 695–700. doi: 10.1076/jcen.23.5.695.1249.

Cicchetti, D. V., & Sparrow, S. S. (1981). Developing criteria for establishing interrater reliability of specific items: Applications to assessment of adaptive behavior. American Journal of Mental Deficiency, 86, 127–137.

Cicchetti, D. V., Volkmar, F., Klin, A., & Showalter, D. (1995). Diagnosing autism using ICD 10 criteria: A comparison of neural networks and standard multivariate procedures. Child Neuropsychology, 1, 26–37. doi:10.1080/09297049508401340.

de Bildt, A., Mulder, E. J., Hoekstra, P. J., van Lang, N. D., Minderaa, R. B., & Hartman, C. A. (2009). Validity of the children's social behavior questionnaire (CSBQ) in children with intellectual disability: Comparing the CSBQ withADI-R,ADOS,and clinicalDSM-IV-TRclassification. Journal of Autism and Developmental Disorders, 39(10), 1464-1470. doi:10.1007/s10803-009-0764-x

de Bildt, A., Sytema, S., Ketelaars, C., Kraijer, D., Mulder, E., Volkmar, F., Minderaa, R. (2004). Interrelationship between Autism Diagnostic Observation ScheduleGeneric (ADOS-G), Autism Diagnostic Interview-Revised (ADI-R), and the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) classification in children and adolescents with mental retardation. Journal of Autism and Developmental Disorders, 34(2), 129-137.

Dutra, L., Campbell, L., & Westen, D. (2004). Quantifying clinical judgment in the assessment of adolescent psychopathology: Reliability, validity, and factor structure of the child behavior checklist for clinician report. Journal of Clinical Psychology, 60(1), 65-85. doi:10.1002/jclp.10234

Glascoe, F. P. (2003). Parents' evaluation of developmental status: How well do parents' concerns identify children with behavioral and emotional problems? Clinical Pediatrics, 42(2), 133-138.

Lecavalier, L., Aman, M. G., Scahill, L., McDougle, C. J., McCracken, J. T., Vitiello, B., et al. (2006). Validity of the autism diagnostic interview-revised. American Journal on Mental Retardation, 111(3), 199-215. doi:10.1352/08958017(2006)111[199:VOTADI]2.0.CO;2

Lord, C. (1989). Autism diagnostic observation schedule: a standardized observation of communicative and social behavior. Journal of Autism and Developmental Disorders, 19(2), 185-212.

Lord, C., Risi, S., DiLavore, P. S., Shulman, C., Thurm, A., & Pickles, A. (2006). Autism from 2 to 9 years of age. Archives of General Psychiatry, 63(6), 694-701.

Do Lord, C., Rutter, M., DiLavore, P. C., & Risi, S. (1999). ADOS. Autism diagnostic observation schedule. Manual. Los Angeles: WPS. i:10.1001/archpsyc.63.6.694

Moss, J., Magiati, I., Charman, T., & Howlin, P. (2008). Stability of the autism diagnostic interview--revised from pre-school to elementary school age in children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 38(6), 1081-1091. doi:10.1007/s10803-0070487-9

Pilowsky, T. (1998). The Autism Diagnostic InterviewRevised and the Childhood Autism Rating Scale: differences between diagnostic systems and comparison between genders. Journal of Autism and Developmental Disorders, 28(2), 143-151.

Rutter, M., Le Couteur, A., & Lord, C. (2003). ADI-R. Autism diagnostic interview revised. Manual. Los Angeles: Western Psychological Services.

Rutter, M., & Schopler, E. (1987) ~. Autism and pervasive developmental disorders: Concepts and diagnostic issues. Journal of Autism and Developmental Disorders, 17, 159-186.

Santosh, P. J., Mandy, W. P., Puura, K., Kaartinen, M., Warrington, R., & Skuse, D. H. (2009). The construction and validation of a short form of the developmental, diagnostic and dimensional interview. European Child & Adolescent Psychiatry, 18(8), 521-524. doi:10.1007/ s00787-009-0004-0

Schopler, E. (1980). Toward objective classification of childhood autism: Childhood Autism Rating Scale (CARS). Journal of Autism and Developmental Disorders, 10(1), 91103.

Sikora, D. M., Hall, T. A., Hartley, S. L., Gerrard-Morris, A. E., & Cagle, S. (2008). Does parent report of behavior differ across ADOS-G classifications: Analysis of scores from the CBCL and GARS. Journal of Autism and Developmental Disorders, 38(3), 440-448. doi:10.1007/s10803-0070407-z

Snow, A. V., Lecavalier, L., & Houts, C. (2009). The structure of the autism diagnostic interview-revised: Diagnostic and phenotypic implications. Journal of Child Psychology and Psychiatry, 50(6), 734-742. doi:10.1111/ j.1469-7610.2008.02018.x

Tomanik, S. S., Pearson, D. A., Loveland, K. A., Lane, D. M., & Shaw, J. B. (2007). Improving the reliability of autism diagnoses: Examining the utility of adaptive behavior. Journal of Autism and Developmental Disorders, 37(5), 921-928. doi:10.1007/s10803-006-0227-6

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