黑龙江省孤独症谱系障碍儿童就诊康复及养护现状

目的了解黑龙江省孤独症谱系障碍(autism spectrum disorder,ASD)儿童就诊、康复和养护现状,为完善ASD康复教育体系及政策的制定提供科学依据。方法分层整群抽取黑龙江省8所孤独症康复教育机构,采用自拟的"ASD儿童康复教育现状及需求调查表"对357名ASD儿童主要照顾者进行现况调查。结果 ASD儿童发现行为异常的平均年龄为(31.08±12.96)月,首次就诊的平均年龄为(35.88±13.20)月,确诊为ASD的平均年龄为(38.64±13.20)月,开始康复的平均年龄为(43.56±16.08)月。3岁前被确诊以及3岁前到康复机构接受训练的儿童分别占39.0%和32.0%。非户口所在地(异地)康复儿童比例为47.3%,每周康复时间20 h及以上的ASD儿童占73.4%。因儿童的康复问题,父、母工作受影响的比例分别为34.5%,67.8%,差异有统计学意义(χ~2=226.32,P<0.01)。调查对象享受政府惠民项目资金支持的ASD家庭占41.2%。结论黑龙江省ASD儿童确诊时间有延迟,早期康复的患者占比较低,孤独症儿童康复教育资源分布存在明显的地区差异,政府惠民救助项目支持的覆盖率还有待提高。

Doctor visit,rehabilitation and foster care of children with autism spectrum disorders in Heilongjiang Province

Objective To understand the status of doctor visit, rehabilitation and foster care of children with autism spectrum disorders in Heilongjiang Province, and to provide a scientific reference for improving ASD rehabitation education system and making the related policies. Methods Eight autism rehabilitation institutions were selected in Heilongjiang Province by stratified cluster sampling, 357 primary caregivers of ASD children participated in the survey by using the questionnaire "ASD Children's Rehabilitation Education Status and Needs". Results The average age of abnormal behavior found of ASD children was (31.08±12.96) months, and the average age of first doctor visit was (35.88±13.20) months, the average age of diagnose was (38.64±13.20) months, and initial rehabilitation was (43.56±16.08) months. The proportion of children who had been diagnosed and have trained in the rehabilitation institutions before the age of 3 years was only 39.0% and 32.0%, respectively. The proportion of rehabilitation out of home town was 47.3%, and rehabilitation>20 hours per week was 73.4%. The proportion of fathers' and mothers' work lives affected was 34.5% and 67.8%, respectively, the differences were of statistical signficance (χ2=226.32, P<0.01). About 41.2% of ASD families received government financial support. Conclusion The average age of diagnose is late prolonged, and the proportion of children diagnosed and training before the age of 3 years was relatively low. There were obvious regional differences of rehabilitation education resources distributions of ASD in Heilongjiang Province. The results also demonstrate the need to sustain and enhance the coverage rate of the government financial support.