贵州省孤独症儿童诊治情况及其家庭现状调查

Diagnosis and treatment of autistic children in Guizhou province and their family status investigation

目的对贵州省孤独症谱系障碍(ASD)儿童诊治情况及其家庭现况调查。方法以贵州省8家ASD康复机构收治的400例ASD儿童及其父母为调查对象,采用自行设计的ASD儿童父母调查问卷(一般人口学资料、诊疗情况、医疗费用支出情况等相关信息)、焦虑自评量表及抑郁自评量表对ASD儿童父母进行调查。结果有效调查问卷400份,发现异常行为儿童的平均年龄(25.78±11.18)月,首次就诊平均年龄(31.02±12.94)月,39.8%父母在发现孩子异常后立即就诊,平均确诊年龄(38.16±15.29)月;ASD患儿开始康复训练的平均年龄(41.16±18.52)月,66.0%儿童在确诊后立即进行康复训练,34.2%坚持康复训练;患儿家庭ASD儿童平均支出医疗费用(3508.13±1731.98)元,35.7%家庭由除父母以外家人帮助照看ASD儿童,54.0%家长发生工作变动,43.0%家庭成员关系发生变化;59.0%ASD儿童父母出现焦虑症状,69.2%出现抑郁症状。结论贵州省ASD患儿的诊断和康复训练时间较延迟,60%以上未能坚持长期康复训练;ASD患儿的家庭经济压力大、家庭负担重,相当部分ASD患儿的家长出现抑郁和焦虑症状。

Objective To investigate the diagnosis and treatment process and family status of children in autism spectrum disorder(ASD),Guizhou China,and provide theoretical basis for promoting early diagnosis and treatment of children with ASD and assisting government departments to formulate relative policies.Methods The parents of children with ASD in 8 autism rehabilitation institutions in Guizhou Province were investigated by the questionnaire of parents of ASD children designed by researchers(including general demographic data,diagnosis and treatment,medical expenses,nursing and other related information),self-rating anxiety scale(SAS)and self-rating depression scale(SDS).SPSS25.0 statistical software was used for statistical analysis.Results According to 400 valid questionnaires,the average age of finding abnormal children was(25.78±11.18)months,the average age of first-visit children was(31.11±12.73)months,39.8%of parents who visited a doctor immediately after finding abnormal children,the average age of children definitely diagnosed as ASD was(38.16±15.29)months.The average rehabilitation age was(41.16±18.52)months.66.0%of the children received rehabilitation training immediately after diagnosis,and 34.2%insisted on rehabilitation training.The average monthly medical and health expenses of the family were(3508.13±1731.98)yuan;35.7%of family were assisted by other family members other than parents to look after children with ASD;54.0%of parents changed their jobs and 43.0%of family members changed their relationships due to their ASD children.59.0%of ASD children's parents suffered from anxiety and 69.2%had depression symptoms.Conclusion The diagnosis of ASD children in Guizhou province of China and rehabilitation training are generally delayed,and more than 60%fail to adhere to long-term rehabilitation training.Families with ASD children have great economic pressure and heavy family burden.Most parents are pessimistic and negative,and suffer from depression and anxiety.