Research has shown that young adults with High Functioning Autism Spectrum Disorders (HFASD) experience difficulties achieving age appropriate goals, such as having peer or intimate relationships, providing for themselves or living independently. As a result, many of them rely on the support of their families. We view this as a "dependence trap", in which the son/daughter's adjustment difficulties coincide with parents' concerns and sense of responsibility, thus leading parents to take a major role of assistance that often leaves them distressed and hampers their son/daughter's independent functioning. In terms of intervention, we find that parents' feelings and their contribution to their son/daughter's dependence are often overlooked. In our formulation of such an intervention we utilized core principals of the Non-Violent Resistance (NVR) approach, shown to be effective in guiding parents of adolescents with challenging behavior and children with anxiety disorders.
This study includes a formulation and trial run of the "dependence trap" intervention protocol with parents of young adults with HFASD. In implementing this protocol, we aim to alleviate the "dependence trap", meaning to help parents recognize specific areas in which they could promote their son/daughter's independence by not providing the same level of assistance they used to, but rather to make themselves available for support as their son/daughter takes charge in those areas. We studied possible shifts following the intervention, such as: parent's emotional state, their sense of capability, the extent of cooperation between parents, the level of assistance they make available for their son, and the son's level of dependence.
Parents of 4 young men (aged 20-26) diagnosed with HFASD, took part in a 10 week intervention. Each couple attended weekly sessions with a psychologist, and duo-weekly telephone conversations with a trained supporter. Evaluation of the intervention was gathered through 2 semi-structured interviews with the parents – pre and post intervention. In addition, parents filled out questionnaires (VABS-II, BDI, a hopefulness scale, a dependence behaviors checklist).
Analysis of the gathered data reveals encouraging shifts in the families' functioning and everyday routine. Parents decreased their assistance in certain areas, offering their son support, yet not caving in by allowing him extensive services as they did before. The young adults, in turn started taking responsibility in those areas. Also, we witnessed a change in the familial atmosphere, as conflicts became less frequent, and cooperation between parents increased. Some parents showed a decrease in depressive symptoms, and an increase in their hopefulness level. One couple dropped out of the intervention plan, as their son needed psychiatric attention, for an ongoing condition.
Parenting a young adult with HFASD is a complex task. Parents’ worries for their son's well-being, may lead them to provide him with extensive everyday assistance, thus experiencing emotional distress, and holding back the son's independent functioning. NVR appears to be an effective approach in guiding those parents in dealing with their son and allowing him areas of independence. It also seems to have positive effects on both parents' and son's welfare.
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See more of: Prevalence, Risk factors & Intervention