BY PAUL CURD, PSY.D.
While every child is unique, it is my hope that if you are a parent of a child with ASD, perhaps you will find something useful in these voices of experience.
Over the last 15 years, I have been fortunate to be able to work with many children, teens, and adults who have been impacted in one way or another by autism spectrum disorder (ASD). During the time I have spent with them and their families, I have developed a significant respect for these parents who work so hard and sacrifice so much to care for their children while dealing with the challenges and unique demands of raising a child with ASD.
While I provided support to these parents, questions began to form in my mind regarding the behaviors, traits, and attitudes these parents possessed that helped them avoid burnout and be more effective at raising their child with ASD. These questions led me to speculate about the possibility of gathering information about behaviors that support parent success, so that other parents could benefit from the experience of those who have walked a similar path. The result of those questions and speculations was a research project in which I interviewed parents who had raised or were raising a child with ASD. Through interviews and focus group discussions, I collected the experiences of parents who identified behaviors they had found helpful. What follows are the parent responses, separated by category, with a bit of explanation. While every child is unique, it is my hope that if you are a parent of a child with ASD, perhaps you will find something useful in these voices of experience.
The questions I asked in this research project focused on five specific areas that previous research identified as particularly stressful for parents of children with ASD or other special needs. Those five areas included marital relationship stress, physical health demands, limitations on social relationships, added financial burden, and scheduling difficulties. This article contains descriptions of 10 behavioral categories that were most often identified in the parents’ responses. Most of the parents who participated in this study had children who would be described as being on the higher functioning end of the autism spectrum. Even so, parents of children with more significant symptoms may find some of the behaviors helpful in caring for their child and for themselves.
Adaptability indicated a degree of flexibility in the parents’ perspectives. Adaptability was seen in parents who were flexible in their concept of what their child was capable of, adaptable in their perception of their child’s motivations, or even adaptable in things like their work schedule in order to better meet their child’s or their own needs. One parent reported that she “had to go to part time work to care for (child), and be home more and take her to all her appointments.” Another parent said they found it helpful when they acknowledged that their child was “not going to make the same milestones as everybody else in the same time frame.”
Behaviors related to teaching indicated an active effort by the parent to personally educate their child. Parents described teaching children things like social skills, independent living skills, how to advocate for themselves, and even how to express themselves in words rather than acting out when they became frustrated. One parent reported that they had to help their child learn to “talk about his feelings rather than being angry and throwing things.” Another parent said, “helping him figure out cues…because he didn’t read facial expressions”, or even “We have insisted on (child) doing things outside of school. Trying new stuff.”
Actively seeking or being willing to accept support was another behavior identified as contributing to parents’ effectiveness. Outside support was defined as assistance provided by an individual, agency or service provider. Responses in this category included seeking financial assistance with the costs of raising a child with special needs, accepting help from friends and family with practical needs, seeking professional help or treatment for their child, or even therapy for themselves to help deal with their own stressors. When paying for services for a child, one parent said, “you can always ask for if there is an application or possibility for scholarship or financial assistance”. Another parent reported receiving help through “Counseling. A lot of counseling”. Others found that, “One of the keys to success has been getting good help.”
Behaviors of self-care involved engaging in activities to help reduce the effects of stress. Responses included finding respite care for their child so they could have time away by themselves. Parents reported general self-care tips such as “eating healthy”, “getting exercise”, or just “doing something good for yourself”. One couple said they paid a babysitter, “We went out once a week and sometimes we didn’t even do anything.”
Communication behaviors described communication between parents, between parent and child, or even between parents and outside sources to help gain assistance or financial support. To benefit their marriage and help with parenting, one couple said, “we have to keep communications open between us because we have different [parenting] approaches.” Others spoke of the benefits of “being quiet” and “listening”. Another parent reported “seeking out resources and listening to the resources.”
Parents reported that their children often experienced benefit from involvement in activities due to the structure and the opportunities for social interaction. Among the activities parents described were music lessons, dance lessons, scouting, church or school activities, martial arts, and horse training.
Collaboration behaviors indicated a cooperative effort to lighten the individual burden of the situation by sharing responsibility or resources with a family member, friend, or other individual. Most of the collaboration behaviors reported in this study took place between the parents. One parent reported, “I worked a day shift and she worked a night shift” so that at least one of them could be available to help with their child’s special needs. Another parent said, “What has been essential to any success that (child) has had, and that we have had, is that we work together. If we don’t, (child) will divide and conquer and nobody wins when he does that.”
Behaviors involving boundaries referred to establishing and acting on healthy emotional and behavioral guidelines within the family. Some parents reported the benefits of setting boundaries that allowed them to take breaks or have some time to themselves, when possible, so that they were not in the caregiver role all the time. Others reported working together so that there was consistency in the expectations for their child’s behavior. This was described as “backing each other up” when setting limits or behavioral expectations for the child. If the parents did not agree, they would talk about it later when the child was not present. One parent said he would sometimes let smaller things go and “just choose the big battles – safety and respect” as boundaries that needed to be firmly set.
Parents reported the benefits of having their children involved in different types of treatment to help with specific symptoms. Some of those treatments included vision therapy, auditory therapy, sensory integration therapy, counseling, group therapy, and pharmacological treatment to name a few. Others described the help they received from attending therapy for themselves.
Some parents of children with ASD report feelings of social isolation as a result of their children’s needs, schedule demands, or troubling behaviors. Participants reported taking proactive steps associated with pursuing and maintaining social relationships. For example, some parents reported regularly inviting friends into their home, rather than waiting to be invited by someone else. Others reported that getting involved in structured events helped diminish the social isolation they experienced. These parents indicated they were able to make friends at support groups, or meet other parents at their children’s organized activities.
It is likely that not all of these behaviors will be practical for every parent reading this article. However, if you are able to integrate any of these behaviors into your routine, you and your child may discover some of the same benefits as the parents who contributed to this research study.•
ABOUT THE AUTHOR:
Paul Curd, Psy.D. is a Faculty Counselor at Whatcom Community College in Bellingham, Washington where he provides mental health counseling, instruction, and faculty support. Dr. Curd has also provided therapy in a variety of healthcare environments where he worked with individuals, couples, and families, many of whom were impacted by ASD.