Caregiver Burnout-Parents of Autistic Adult Children
Having an adult child with Autism can result in adverse feelings such as isolation, exhaustion, escalated anxiety, guilt, and disconnection. Without the proper support systems in place, parents are at risk of burning out, as many find themselves having to provide life-long assistance to their adult child. The continued involvement may impair parents’ ability to maintain friendships, feel understood, retire, travel, or experience typical developmental milestones such as empty nesting or becoming a grandparent. Studies have found that Autistic adult children are likely to need greater support if they have not learned ways of achieving Activities of Daily Living Skills (ADLs).
Activities of daily living skills, or ADLs, refer to the daily tasks people do for self-care. The basic ADLs include:
EatingBathingDressingGrooming (haircuts and oral hygiene)Work or Homemaking
Higher order tasks or Instrumental ADLs involve a person’s ability to interact effectively with their environment and others. Instrumental ADLs consist of:
Managing moneyTaking medicationAttending doctor’s appointmentsPreparing mealsShopping for groceriesUsing transportationMaintaining a livable home environment
While reading a journal about Autism and the implications of ‘caregiver burden,’ a light bulb went off. I realized that my parents fit into this population and seem to be struggling with similar experiences, as my adult sibling still needs support with his Instrumental ADLs. I have seen the effects that limited ADLs impose on one’s independence, confidence and abilities, as well as the relationship between the adult child and their parents. What I have found to be helpful for my parents is unconditional positive regard, validating their efforts and boundaries, and sharing resources with them like the Autism Society.
My increased understanding of caregiver burnout for parents of adult children with ASD has informed my clinical practice to provide systemic care so that everyone impacted by the diagnosis of Autism has access to appropriate therapeutic support. Therapeutic goals addressed in this therapy include:
Helping parents work through difficult feelings such as guilt, grief and frustration
Educate them on ways to teach ADLs and hold their adult child accountable
Assist them in prioritizing self-care to avoid burnout
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