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

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).

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