What types of stress do autism families experience?
What can we do as autism grandparents to help?
Helpful information can be found in a 2009 research study conducted by the Interactive Autism Network. (IAN, now closed, was a partnership between the Kennedy Krieger Institute and the Simons Foundation that conducted research that would lead to a better understanding of, and better treatments for, autism.) IAN’s 2009 “Family Stress Report” resulted from a survey of thousands of autism parents.
It is important for us autism grandparents to be aware of the Report’s two fundamental findings. First, autism has a negative impact on relationships between immediate family members, between immediate and extended family members, between family and friends, and on social involvements. Second, autism families can and do show extraordinarily positive resilience.
We grandparents, while being aware of autism’s negative impact, can work hard to be helpful and positive in our relationships with our grandchild’s parents, extended family, and friends.
IAN’s Family Stress Report showed that only 25% of mothers and 30% of fathers reported autism’s overall positive impact on their marital relationship, while 60% of mothers and 54% of fathers reported an overall negative impact. Both parents identified two primary issues that stood out: division of labor and one parent’s denial of the autism diagnosis. Generally the parent who did not work outside of the home reported an unfair and unequal burden of caretaking. And it is common for autism parents to report an inadequacy of “couple time” and intimacy. And when there is an availability of time, often it is accompanied by fatigue and exhaustion that get in the way of the time being productive. Often we grandparents have a vantage point that allows us to understand all sides of such issues, and thus we may be able to offer assistance, even if it is simply an understanding ear.
The IAN Family Stress Report found that autism has a negative affect on the extended family relationships of nearly half of all autism families. This is because autism can be disruptive for family functions and gatherings, and because extended family members usually don’t have an adequate understanding of the challenges of autism. Critical comments such as the use of the phrase “a good spanking” are common. And extended family relationships that were always thought to be strong often disintegrate once autism is introduced. Of course the opposite sometimes happens too – weak family relationships transforming into strong ones. We autism grandparents can try to be catalysts for the later.
And finally, the IAN Family Stress Report found that 59% of autism families reported an overall negative impact on their friendships and social network. Only 19% reported a positive impact. This is because venturing into the social world can be hard, especially when tantrums and meltdowns and other problem behaviors occur. And since autistic children look normal, they don’t attract the same type of immediate empathy that children with visible disabilities receive. Thus social interactions are often sprinkled with unkind comments from uninformed and judgmental persons. Sometimes autism families are asked to leave organizations or groups because of the autistic child’s challenges. Parents who had a wide range of friendships prior to autism, reported significant strains on relationships. Some closest friends even end friendships because they don’t want their own children to interact with the autistic child. One parent said, “I quickly learned who my real friends were.” But autism families overall reported finding new friends among other autism families – families who had a first-hand understanding. For autism parents it can be exhausting trying to educate folks.
We autism grandparents can be proactive in providing empathy, understanding, and support for our grandchildren’s families. And we can be aware of, and help build upon, the IAN Family Stress Report’s bright finding: resilience. It showed that autism parents often can and do: find pleasure in providing care; enjoy a sense of accomplishment; sense that autism has strengthened family bonds; have a new sense of purpose; have a sense of personal growth; have increased spirituality; and gain a new perspective on what’s important in life.
And we autism grandparents can find value in the IAN Family Stress Report’s final sentence: “A child's diagnosis with ASD may be an end to one set of expectations and dreams, and may lead to the many stresses we have discussed in this series, but it is often the beginning of an inspirational journey as new identities, values, and perspectives are forged.”