During difficult periods of life, such as experiencing a tragic loss or sudden break-up, those you care about need you to be there for them. At other times, your loved ones may not need help, but at least would like some support and encouragement. It’s well known that receiving social support is one of the best and most effective ways to cope with stress. People who perceive themselves to be supported are also most likely to be happier, and may even live longer than those who don’t. New research on social support for parents of autistic children shows just how you can be the person on whom your loved ones can most rely.
The aging parents of adult children with autism spectrum disorders (ASD) undoubtedly face major challenges in their daily life and, according to this new research, benefit tremendously from the type of social support that friends and loved ones can provide. Christine Marsack, in the School of Social Work at Eastern Michigan University, teamed up with Preethy Samuel of Wayne State University (2017), to investigate the role of social support in mediating the amount of perceived burden and quality of life. As the authors point out, caregiving research on adult children and their aging parents has typically focused on predicting burden in the children. There is far less known about what happens to aging parents when it’s the children themselves who are in need of caregiving.
The Michigan team based their work on the cognitive model of stress and coping, in which it’s the appraisal of an event as stressful that leads it to have a negative impact on the individual. In the case of parents of children with ASD, after coping with the challenge of receiving the diagnosis itself, their next step is to come “to grips with the condition and obtain access to support services to assist with caregiving” (p. 2379). The question that Marsack and Samuel investigated was whether formal or informal social support would have ameliorating effects on parental stress.
Using a sample of 320 parents aged 50 and older, the majority of whom were under 70 years of age, the research team administered an online survey inquiring about psychological quality of life, perception of caregiving burden, contact with formal support agencies, and perceived degree of informal social support. Formal supports were used heavily by sample members, including psychiatric, financial, counseling, and adult day care, for example. Even the relatively wide range of opportunities to get help in this way was not enough to stave off the effects of perceived burden on parental mental health outcomes. Instead, it was their answers to a six-item questionnaire of informal support that proved to be key in reducing their perceived stress.
The questionnaire used by Marsack and Samuel was one developed for use in assessing perceived availability of social support by coronary heart disease patients that has been widely adapted to other situations. It’s from this measure, known as the Enhancing Recovery in Coronary Heart Disease (ENRICHD) Social Support Index (ESSI), that we can now look to see how you can support people coping with challenges in their own lives right now:
1. Be available to listen.
The ESSI asks whether there is someone who will be available to listen when needed. This means that you provide a sounding board when the person who needs your support approaches you. It doesn’t mean that you provide help regardless of whether you’re being asked for it. Let the person you care about know that you’re willing to listen, uncritically, when the situation demands it.
2. Be available with advice.
When you are approached for help, providing advice can prove to be very supportive. Again, providing unsolicited advice isn’t perceived as particularly supportive, but being ready for it when asked will help ensure that your advice hits a receptive audience.
3. Show love and affection.
Without providing anything in the way of objective support, it’s often enough just to know that someone cares to help get the stressed individual through tough times. The love and affection could be of the face-to-face form, and it's probably best when it is, but it can also come in the form of virtual cheers.
4. Help out every now and then with daily chores or by running errands.
This is something you need to be able to do in person, so if you live some distance away from the individual you would like to support, it may mean that you take a trip there every few months to do some of the heavy lifting around the house, or just help with some on-site logistics.
5. Support the individual during the decision-making process.
The person you care about may have to come up with plans that require more than just a sounding board or advice. Being patiently willing to go through the steps required to solve the problem can give the person you care about a more balanced perspective than would be possible if he or she were making this decision alone.
6. Be a person who the person you care about can trust and confide in.
The ESSI inquires about being actually present, but if this isn’t feasible, that quality of being trustworthy seems to be key. Caring for an adult child with ASD may have led some of the parents to wish they could talk about their frustrations, perhaps even about those they felt toward their spouse, with someone outside the relationship. Worrying that the person they told might violate that trust would only add to the stress of their situation.
You might think it’s enough for the person you care about to sign up for an established support network or to be able to receive financial or emergency assistance. The Marsack and Samuel study shows that the quality of the friendship, trust, and sensitivity you provide that can make an even greater difference.
There’s no way to avoid all of the stressful situations that life can present, whether through family situations, work problems, or emergencies. Fulfillment in our relationships involves, as this study shows, that willingness to give the support that will make the most difference in helping those we care about.
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Copyright Susan Krauss Whitbourne 2017
Marsack, C. N., & Samuel, P. S. (2017). Mediating effects of social support on quality of life for parents of adults with autism. Journal of Autism And Developmental Disorders, 47(8), 2378-2389. doi:10.1007/s10803-017-3157-6