支持自閉症幼兒家庭的關係網絡

Support Networks for Families of Children with Autism

研究者採用生態系統觀點探究自閉症幼兒的家庭關係，以母親所感知的社會支持網絡，呈現系統所發揮的功能。本研究以五名自閉症幼兒的母親為訪談對象，主要的目的在於了解以「幼兒為中心」所形成的支持網絡是否足以提供幼兒的特殊需求。家庭內部的關係為自閉症幼兒的非正式支持系統，包括父母、手足、祖父母、親戚與褓姆等不同關係的支持者。家庭外部因為自閉症幼兒的需求與醫療復健相關人士建立的關係，也是所謂的正式支持系統，由主治醫師、社工師、特教老師、心理學家以及治療師等人員所組成的專業團隊，搭建理想的療育網絡。本研究中的發現，透過母親積極地尋求協助，正式或是非正式社會支持網絡並非不完整，而是提供協助的時效性仍待改善。訪談結果也發現父職參與的性質多為經濟與交通接送，父親表達對家人的情感需加以鼓勵，自閉症幼兒手足的應對與適應依其性別與年齡而有所不同。當家庭內部支持網絡隨著幼兒的成長擴大至家庭外部關係時，提供幼兒與其家庭健全的療育資源網絡，在整合專業照顧資源的過程中，所謂「療育專家」的角色值得受到重視。文末建議未來制定相關政策時，應納入社區支持系統的角色與功能，使自閉症幼兒的家庭關係能夠更趨於多元化，進而發展以「家庭為中心」的支持網絡系統。

Family relations of children with autism perceived by mothers as social support networks were studied from an ecological systems perspective. Five mothers with autistic children were interviewed individually in order to reveal that, to what extent, the autistic child-centered support networks had provided with diverse resources. The significances of the internal family relationships between children and their parents, siblings, grandparents, relatives, and other caregivers were defined as the informal social support system. On the other hand, an ideal formal social support network was composed by a leading physician, with a team of members in social work, special education, as well as developmental psychology and therapies in all related fields. One of the major issues was to highlight the fullness of the support networks constructed by those members who were involved in the networks. The results revealed that mothers with autistic children were actively engaged in building up the extra-familial networks. However, the formal social support network was still unsatisfied with a lack of not satisfactory immediacy. It also indicated that father involvement was mainly related to the aspects of finance and transportation in family activities. Paternal care was encouraged to be expressive with genuine feelings and emotions towards the family. Siblings’ coping and adaptation to the situation were varied by their gender and age. As long as the relationship was outreached from the inner family to the outer family, with the construction of professional support resources ongoing, the role of the expert of the outsiders was critical. A closing note at the end suggests that any policies made in the future will be expected to include the community support systems in a fashion of muti-dimensional network for family-centered services.