Cultural Differences in Symptom Recognition, Diagnosis, and Time Lag of Autism: A Comparison Between Japan and the US

Background:

The increase of autism is a global phenomenon, yet little research has examined whether cultural factors contribute to differential timelines for diagnosis of autism. Reasons for later diagnosis do not appear to be solely related to lower socioeconomic status or resources available in each country. Early markers of autism in one culture/country may be considered normal development in another, and may affect the timing of diagnosis (Matson et al. 2011). Cultural beliefs attached to disability can also create barriers to early identification (Saetermoe et al, 2001).

Objectives:

The current study compares factors associated with the first signs, first formal diagnosis, and the time lag between them, in U.S. and Japanese families.

Methods:

These data are from our ongoing cross-cultural research on mothers of children with autism. The study population included US and Japanese mothers of children ages 2-12 who had received a formal diagnosis of autism. Participants completed 5 questionnaires (Parenting Stress Index (PSI), Social Communication Questionnaire (SCQ), Social Responsiveness Scale (SRS-2), Child Behavior Checklist (CBCL), demographic questionnaire) and were interviewed regarding their experience of parenting their child with autism.

Results:

The data from fifty US and 50 Japanese mothers were analyzed. Mean age (months) of the first concern, the first formal diagnosis and the time between the two were earlier for the U.S. sample (18.7, 40.6, and 21.9) than those of the Japanese sample (20.6, 48.4, and 27.8). For both countries, 76% of participants indicated that parents (as opposed to professionals) were the first to recognize abnormalities of the child’s behavior and development. Table 1 shows the comparison of the first symptoms to arouse concern between the US and Japan. In the ANOVA analysis, symptoms specific to autism, such as communication difficulties, fixation, and sensory issues, were more often referenced as the first symptom in the US sample compared to the Japanese sample. Interviews indicated the reasons for time lag as (1) long wait time, (2) medical and educational professionals’ lack of knowledge about autism, (3) complex medical system, and (4) availability of intervention programs before formal diagnosis in the U.S ((1)(2) for Japan).

Correlations between early diagnosis and child/parent characteristics (Table 2) revealed that greater autistic characteristics were significantly correlated with earlier formal diagnosis for Japanese children, whereas greater autistic characteristics were significantly correlated with earlier age of first sign for U.S. children. Finally, child problem behavior, especially internalizing behavior, was positively associated with later recognition of child’s abnormalities for the Japanese sample. There was no correlation between first sign/diagnosis and child problem behavior for the U.S. sample.

Conclusions:

Our preliminary findings indicate that children with greater autistic symptoms are noticed or diagnosed at earlier ages in both countries. Child behavior problems, especially internalizing behaviors, may delay parents or professionals from noticing abnormalities of development in Japan, but not the US. More research is needed on cultural and child/maternal factors associated with the timing of diagnosis.