There is ripple effect in a family with an autistic child, an astronomical one in terms of family dynamics. Dr. Cecelia McCarton, founder of The McCarton School and Center for Developmental Pediatrics in New York notes that family members — parents, siblings, grandparents, and extended family members, are all affected by a child’s autism.
Five main areas of family functioning are commonly affected, the degree of challenge depending on the severity of the autism. In this abridged and edited version of a WebMD piece, journalist Kathleen Doheny focuses on these issues and how to cope with them.
Adjusting parental expectations
“After a diagnosis of autism, parents’ expectations change,” says Patricia Wright, national director of autism services for Easter Seals. Experts says that some of these expectations may not have even been verbalized, although they were in the back of parents’ minds. For instance, most parents naturally expect their child to go to college or to pursue a career.
Raising an autistic child is not what you thought your life would be or look like; as a result, there is a large degree of grief that must be addressed, alongside a shifting of expectations and visions.
Worrying about the siblings of autistic children
In a recent study published in the Journal of Autism and Developmental Disorders, researchers compared siblings of autistic children with siblings of non-disabled children; they found those with the autistic sibling were actually better adjusted psycho-socially and emotionally. They did find, however, that it’s more difficult for the non-disabled child to cope with the autistic sibling if multiple risk factors (such as low income) are present. It is, nonetheless, still wise to make sure the other children are afforded one-on-one time with each parent.
A sibling’s challenges with accepting his autistic brother or sister often occur at life transitions involving other children — a first sleepover or a first date. The sibling may worry about what the new friend might think of his autistic brother or sister, or he may be anxious about possible ridicule. McCarton stresses how important it is to provide space for the sibling to express (and find validation for) these ambivalent, complex, and often difficult, feelings.
Tending to the marriage
There is incredible stress placed on a couple with an autistic child. Although parents are already time-strapped dealing with behavioral therapists, doctor appointments, and above-average financial stress, spending more time with one another and nurturing their relationship is essential — even if it involves just watching a video together or talking after the kids are asleep.
It’s also important to talk together about the autism, one another’s frustrations and one’s goals for the child.
Holding onto family traditions
Family rituals such as vacations can become challenging or seemingly impossible for families with an autistic child. McCarton encourages families to think through what can be done to make the child with autism (who can become extremely upset by changes in routine that come with vacations) more comfortable on a trip.
In addition, making accommodations for the needs of the entire family is important: renting a big beach house for a large, extended family vacation, allowing everyone present to pursue their interests; traveling in two cars to a family event; or asking for a booth against the wall in a restaurant.
Maintaining a social life
Given the trouble autistic children have with social interactions and changes in routine, getting through picnics and parties can be difficult. But keeping up outside friendships — as a couple and as a family — is important for everyone’s mental health.
It is always a good idea to let friends and acquaintances known in advance what accommodations might be helpful (such as requesting a quiet room to which the child may retreat if overwhelmed).
Most essential is letting go of that image of how an “ideal Hallmark card family” should look and behave. Accepting that families can be as eccentric as they need to be, opens up the emotional space for finding enjoyment in odd places with autistic children.