Raising Children with Autism: Mothers Share Their Amazing Stories
Dedicated to Rebecca
My name is Dr. Sharon Link-Wyer. I studied the lived experiences of mothers of children with high functioning autism (HFA) for my dissertation. While some aspects of the autism parenting phenomenon had been highlighted before I wrote my dissertation, none of the studies fully explained the phenomenon of maternal experiences as a whole.
I interviewed several mothers for my study. The data for my dissertation was collected during 20 hours of interviews and led to seven themes concerning the maternal experience of raising a child with HFA. This study used a heuristic phenomenological methodology, which allowed me to more fully understand and appreciate the stories of my participants. Utilizing this methodology helped me to understand my own experience raising a child with autism. I am sharing results from these interviews for the first time in this article.
The themes I discovered included:
- Experience of stress (extreme trauma) during pregnancy and birth
- Grief, ambiguity, and frustration after diagnosis
- Needing and receiving support for their parenting journey
- Maternal advocacy
- Major systems shortfalls in services and supports
- Future expectations
- Maternal advice to other moms facing an autism diagnosis
Each of these significant findings was explored as they related to the purpose of better understanding the phenomenon of the maternal experience of raising a child with HFA. The participants in this study provided a rich experiential overview of what it is like to raise a child with HFA. Because their stories contribute to understanding about this topic, they have implications for current theory and professional practice.
In honor of Mother’s Day, this article purposes to provide insight, advocacy, and support for mothers living this experience. Let’s take a look at each of these relevant themes
1. Experience of stress (extreme trauma) during pregnancy and birth
This was the most surprising and potentially relevant finding from my study. All of the mothers interviewed reported the experience of extreme stress during their pregnancy or the birthing process itself and described their pregnancy or birth experience as “stressful” or “traumatic.” The stress or trauma usually took place during the sixth to eighth month of gestation, although all moms interviewed for my study reported high levels of anxiety and/or stress during their pregnancies.
Pregnant mothers need to take care of their mental and emotional needs during pregnancy. Despite whatever care is taken, traumatic situations can still occur, and we generally live with too much stress and trauma in our families. Take care of yourself!
Traumas found during my research were extreme and did not generalize. The combination of “premature birth and no prenatal care” led to complications. For example, one mom reported that she “experienced trauma” during the birth experience. There was a lot of circumstantial data that could be studied in future research.
Based on these interviews, mothers advised that pregnant women need to manage or limit their stress during their pregnancies or birth. All of the mothers also indicated that all pregnant women should be deeply “aware” of their stress in order to “limit” their stress during their pregnancy and childbirth. There was not enough data from my study to generalize from this sample to the population as a whole, but there are two takeaways. Stress on fetuses may have long-term impacts that should be studied more vigorously. Pregnant women need to be mindful regarding anxiety and other stress-based problems. The big takeaway was to make sure pregnant women stay healthy during pregnancy.
2. Grief, ambiguity, and frustration after diagnosis
All of the mothers reported the experiences of grief, ambiguity, or frustration after receiving the initial diagnosis. This grief continued on throughout different life experiences. One mother stated: “I don’t think I had a ‘grieving period,’ per se, but I grieve new each time something happens.” Other moms indicated that their children are “teased by other children” and experience “school problems because of a social situation” and as a result, they experience “grief and anguish.”
Aside from social and academic considerations, mothers faced the fear of the unknown. One mom stated, “It’s always sad to find out that your child’s not perfect and healthy and this was “like fighting a disability that [didn’t] have a name to it. It was invisible. And so, I didn’t know what I was up against.” Part of the ambiguity that one mother reported: “not knowing what to call the diagnosis.”
All of the mothers described some aspects of “frustration” as part of their maternal experience. Mothers generally reported that there were academic, social, and behavioral problems that their children with autism faced that contributed to their feelings of frustration and ambiguity. These mothers knew that these problems were going to be a relevant factor in their present and future parenting journey. I have experienced this ambiguity myself. As a mother with a 21-year-old autistic adult son, the level of care has diminished, but I am still financially responsible for my son. He does live on his own and takes care of his dogs, but he is unemployed. The unemployment gap for individuals with autism is significant. Because autism is largely a social disability, and there is so much difficulty with making friends and develop a network, joblessness is a difficult challenge to overcome.
3. Needing and receiving support for their parenting journey
All of the mothers reported needing and receiving “some kind of support” for their parenting journey. The support was described in many different ways and involved support from family members, support organizations, religious faith, and involvement with outside roles as a means of staying busy and “developing the ‘self’ outside of just being a mother.” Several mothers used the term “support network” to describe their means of coping. Most of the mothers described the support experience as a necessary and highly valued aspect of their parenting journey and advocated for support systems.
All mothers reported that parenting their child required a team effort and understanding from others. Some described their husband or partner as a “main source” of support, while others talked about relying on their own mother or mother-in-law as that support person. All of the mothers described having different types of support networks, and they all agreed that support is an essential element in helping them manage the multiple aspects of raising a child with special needs. Some reported that support was received from an Internet support group or from a helpful monthly autism advocacy magazine.
All of the moms emphasized the importance of “making a connection with others to create a visible partnership in order to gather needed support.” This support could come from their faith in God or in making sure they taught their child to be as independent and self-reliant as possible. Mothers also advised other moms facing the diagnosis to maintain their own interests outside of their child. Mothers must maintain a sense of self, personal identity, develop interests outside their child, and create a network of other women.
4. Maternal advocacy
All mothers reported that their children have special advocacy needs. Each of the mothers reported being an advocate. Participants reported their children experiencing “teasing and other difficulties in school.” They also suggested that they would go to almost “any lengths “to protect their children and advocate for them. Mothers consistently described advocacy as an outcome of a “transformed parental mindset.” The mothers also pointed out that they possessed “tremendous confidence” in their abilities to take care of their children under difficult circumstances, such as when their children’s educational needs are not being met.
Mothers individually expressed that their child needed a variety of advocacy in different circumstances. Mothers reported “feeling like a mother bear,” and said, “When another child teases my son I want to take the names of those children, and I want to call their parents to make them stop their children from teasing him.” One mother complained to administrators and said, “If you don’t take care of it then we are going to take some other steps. [My son] should not have to feel afraid to go to school.”
Society marginalizes individuals seen as weak or vulnerable. Mothers told me that they wanted to demonstrate advocacy and teach their children to be able to advocate for themselves. As a mom who raised my own son with autism, advocacy was front and center. This maternal tendency does not go away despite the age of my child. I still pitch in as needed to ensure that he gets what he needs. This is as true at work as it was in school with other kids. The lasting impact of my autism maternal experience is ADVOCACY.
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5. Major systems shortfalls in services and supports
All participants reported their experience with education, medicine, and family systems, and spoke to the implication that major systems shortfalls have long-term implications for systems responsible for helping, supporting, and protecting parents and children. One mother reported a “large gap between her son and other children both socially and emotionally” led to “teasing and bullying.” Other women homeschooled their child, finding an alternative to the traditional classroom, and at the very least being actively engaged in their child’s school experience.
Similarly, mothers described feeling frustrated with the shortcomings of the medical system during the birthing process and in trying to obtain a diagnosis. A couple of moms described their birth experience as “grueling.” In small and remote locations, especially “there wasn’t any support in the medical field.” One of the biggest issues that mothers described were an adverse side effect to medications.
Several mothers reported past or present difficulties with their family systems, which included difficulties in their spousal relationships among siblings and in some cases with other family members who negatively viewed a child with disabilities. Strong family relationships were recommended along with understanding the systems as a whole that govern outcomes for the autistic child.
6. Future expectations
All mothers reported the feeling of uncertainty about their child’s future. One commonly reported experience was uncertainty about future employment. Another commonly reported experience was uncertainty concerning future living arrangements. Overall, mothers indicated social deficits and other attributes of HFA played a significant role in their concerns. To alleviate these concerns, mothers described provisions they made for their children’s futures.
Moms interviewed for my study stated they had spent a lot of time making provisions for their boys’ futures. One mom indicated that she and her husband were financially advantaged and would provide for her son’s “future living arrangements.” Another provision was life insurance that was to be kept in trust so her son could be financially secure. This particular mother described her persistence and repeated attempts to obtain social security. Considering how the autistic child will be taken care of long-term is something to think about.
7. Maternal advice to other moms facing an autism diagnosis
All of the mothers interviewed wanted to give advice to other mothers of children with HFA. The mothers described how sharing their experience may alleviate difficulties or obstacles. Advice related to alleviating stress, coping with difficult teachers and doctors, trusting their own instincts, and coping with the opinions of others who may not understand the behaviors of their children.
These moms stated that other mothers should take time for themselves whenever possible. Moms emphasized taking each situation “minute-by-minute” and not worrying about tomorrow, but rather “just worry about right now.” One mom stressed the importance of physical exercise, because “physical exercise helps.” Another woman stressed the importance of “taking breaks.” Breaks allow mothers to “come back refreshed” and “ready to deal with issues” and “not be so tired all of the time.” She emphasized, “I think it is important to have other outlets other than just your child.”
“Do not let the world make you handle your child in a way that you and your child
will regret later.”
Other advice revolved around being an exceptional advocate for the child. Engage in the child’s education and activities with teachers. Many women are taught to leave the “expertise” in the hands of “professionals.” With autism, the best advice that I received from these moms was “trust your intuition.” You know your child. You are the expert on your child. Believe in yourself. “Do not let the world make you handle your child in a way that you and your child will regret later.”
This article was featured in Issue 62 – Motherhood: An Enduring Love