Benavidez Hannah R, Johansson Margaret, Jones Elizabeth, Rea Hannah, Kurtz-Nelson Evangeline C, Miles Conor, Whiting Alana, Eayrs Curtis, Earl Rachel, Bernier Raphael A, Eichler Evan E, Neuhaus Emily
Department of Psychology, University of Washington, Seattle, WA, USA.
Department of Psychiatry & Behavioral Sciences, University of Washington, Seattle, WA, USA.
J Autism Dev Disord. 2024 May 29. doi: 10.1007/s10803-024-06414-2.
Specialized multidisciplinary supports are important for long-term outcomes for autistic youth. Although family and child factors predict service utilization in autism, little is known with respect to youth with rare, autism-associated genetic variants, who frequently have increased psychiatric, developmental, and behavioral needs. We investigate the impact of family factors on service utilization to determine whether caregiver (autistic features, education, income) and child (autistic features, sex, age, IQ, co-occurring conditions) factors predicted service type (e.g., speech, occupational, behavioral) and intensity (hours/year) among children with autism-associated variants (N = 125), some of whom also had a confirmed ASD diagnosis. Analyses revealed variability in the types of services used across a range of child demographic, behavioral, and mental health characteristics. Speech therapy was the most received service (87.2%). Importantly, behavior therapy was the least received service and post-hoc analyses revealed that use of this therapy was uniquely predicted by ASD diagnosis. However, once children received a particular service, there was largely comparable intensity of services, independent of caregiver and child factors. Findings suggest that demographic and clinical factors impact families' ability to obtain services, with less impact on the intensity of services received. The low receipt of therapies that specifically address core support needs in autism (i.e., behavior therapy) indicates more research is needed on the availability of these services for youth with autism-associated variants, particularly for those who do not meet criteria for an ASD diagnosis but do demonstrate elevated and impactful child autistic features as compared to the general population.
专业的多学科支持对于自闭症青少年的长期预后很重要。尽管家庭和儿童因素可预测自闭症患者的服务利用情况，但对于患有罕见的自闭症相关基因变异的青少年，我们所知甚少，这些青少年通常有更多的精神、发育和行为需求。我们调查了家庭因素对服务利用的影响，以确定照顾者（自闭症特征、教育程度、收入）和儿童（自闭症特征、性别、年龄、智商、共病情况）因素是否能预测自闭症相关变异儿童（N = 125）的服务类型（如言语、职业、行为）和强度（每年小时数），其中一些儿童也确诊患有自闭症谱系障碍（ASD）。分析显示，在一系列儿童人口统计学、行为和心理健康特征方面，所使用的服务类型存在差异。言语治疗是接受最多的服务（87.2%）。重要的是，行为治疗是接受最少的服务，事后分析显示，这种治疗的使用唯一可由ASD诊断预测。然而，一旦儿童接受了某种特定服务，服务强度在很大程度上是可比的，与照顾者和儿童因素无关。研究结果表明，人口统计学和临床因素影响家庭获得服务的能力，但对所接受服务的强度影响较小。针对自闭症核心支持需求的治疗（即行为治疗）接受率较低，这表明对于患有自闭症相关变异的青少年，尤其是那些不符合ASD诊断标准但与一般人群相比确实表现出较高且有影响的儿童自闭症特征的青少年，这些服务的可及性还需要更多研究。
