IAN Research Report #11: Family Stress - Part 3 Relationships and Resilience
Date First Published: September 2, 2009
The Interactive Autism Network (IAN) Project, the nation's largest online autism research effort, has collected information on challenges experienced by families who have a child with an autism spectrum disorder (ASD) from thousands of participants across the United States. In our first family stress report, we explored the contribution of child-related issues -- such as a child's behaviors or erratic sleep habits. In our second report, we turned our focus to the potential effect on family finances and parents' educational and career goals. In this final report, we direct our attention to relationships with friends, extended family, and partners. How are relationships affected, for better or worse, when a family is facing the prospect of raising a child with an ASD? How do families transform their lives to meet the challenge of being an "ASD family"?
Please Note: These Findings Are Preliminary
The analyses presented here by the Interactive Autism Network are preliminary. They are based on information submitted via the Internet by parents of children with autism spectrum disorders (ASD) from the United States who choose to participate. They may not generalize to the larger population of parents of children with ASD. The data have not been peer-reviewed -- that is, undergone evaluation by researchers expert in a particular field -- or been submitted for publication. IAN views participating families as research partners, and shares such preliminary information to thank them and demonstrate the importance of their ongoing involvement.
Parents of children on the autism spectrum who answered our questions about the impact of their child's disability on relationships were very clear about one thing: the matter is very complex, and not easy to describe or quantify. "How can you measure this?" they asked. "There is so much bad, and yet there is so much good, often happening at the same time." Keep this in mind as you view the pie charts below, because they oversimplify reality.
To delve into the true complexity of that reality, we turned to parents' comments, which they can leave for us when answering their IAN online questionnaires.
When it came to friendships and social networks, nearly 60% of mothers and fathers reported that having a child on the autism spectrum had a negative impact overall. (See Figure 1.)
Families told us that venturing out into the larger social world at all could be hard. This was especially true if a child with ASD had tantrums or meltdowns, drawing negative reactions from strangers. Unlike children with other physical or mental disabilities, children on the autism spectrum usually appear physically fine -- there are few external indications. In some cases, they are also verbally precocious. Unfortunately, this often means that the kind of instant empathy (or at least vague understanding) that might be directed towards the parents of a child with a more obvious disability is not afforded parents of children with ASD. In fact, the child's difficulties may be attributed to lackadaisical parenting, with scathing looks aimed at caregivers.
"Most people do not understand the difficulty in taking a child with ASD out in public," said one mother. "We have had very negative experiences with judgmental people. They see a little girl that is crying and pitching a fit and because she looks normal they think that a 'good spanking' would fix her. If only!!! I have become thick skinned and learned to tell people that she is autistic and did not choose and cannot help that, but they are rude and judgmental and they should be able to help that."
It is not only strangers who may react negatively to children with autism and their families. Parents were sometimes asked to leave an organization, like a playgroup or a church, due to their child's difficulties. It is no wonder that feelings of isolation and loneliness are common among parents of children with ASDs who, after many painful encounters, may begin to avoid social situations. In fact, one study showed that families with a child age 3-5 with ASD were 70% less likely to attend a religious service once per week or more compared with children with ADHD or no issues at all. 1 Another study, this one focused on quality of life in families with children with disabilities, found that parents of children with ASD experienced more difficulties in their social relationships than parents of typically developing children or children with cerebral palsy or mental retardation. 2 Parents of children with ASD in Canada interviewed about their experience described how they had come to "live in a world of their own" -- a world of isolation. 3
Some IAN parents told us they themselves had autistic traits, or traits often described as reflecting the "broad autism phenotype," such as social anxiety. 4 5 6 For these parents, the situation was doubly tough. Social interaction was not their strong point to begin with; now, thanks to people's response to their child's difficulties, they had to face a social world even less welcoming than before, which certainly did not make overcoming their own social struggles any easier.
Parents who had enjoyed a range of friendships before their child's issues came to light described significant strain in many of these relationships. "I was shocked when some of my very closest friends asked us not to come back and play because they did not want my son around their children," said one mother. "I've tried not to become bitter and to pick myself and my son back up by making new friends...and we have. But I still can't deny that I was very hurt and discouraged. I cried for days because it is this kind of ridiculousness and ignorance that angers and infuriates me." Said another discouraged mother, "I have no friends. After I repeatedly declined invitations and things because no one can handle my son and he is unable to restrain himself at functions, everyone eventually just stopped asking me or talking to me."
In brief, mothers and fathers told us that having a child on the autism spectrum is one of those situations that quickly reveal who your true friends are:
- "If you have good friends they are good through the Autism diagnosis of your child; if they are not good friends, they are gone...they drop off the face of the earth."
- "Those 'best friends' turn to shadows...."
- "I quickly learned who my real friends were, so there was some very positive impact.... I no longer have the time, energy, or patience to put up with the old 'false' friends."
Many parents reported that they had found their way to new friendships, often with others going through the same life-altering experience. One mother explained, "My truest friends are people who also have children with autism or some other developmental disability -- they understand my life. I don't have to explain everything to them before I vent. If I try to talk to someone who I have to educate before I vent, I'm too exhausted to vent by the time I'm done educating them! The friends that I had whose lives are not affected by disability fell by the wayside because our lives placed too many limitations on us and therefore on them."
In sum, although some friendships and social networks faded away, new friendships based on shared adversity and celebration of the positives often bloomed in their place.
Relationships with Extended Family
What did parents experience as far as relatives' responses to their child with ASD? Overall, 43% of fathers and nearly 50% of mothers reported a negative impact on extended family relationships. (See Figure 2.)
For a great many families, however, the impact was quite mixed, with some relatives in denial and dismissive of the child's diagnosis, while others were helpful and supportive. "It's positive on my wife's side," one father said, "but negative on my family's side. They say, 'He's fine! All kids develop differently. Your Dad didn't talk till he was 3.' My dad also didn't spin toy car wheels for hours on end, bang his head on the wall and gag himself for fun...."
What help is offered is deeply appreciated by families, and parents reported that some relationships that hadn't been that close became more positive and warm. Whoever helped -- siblings, cousins, aunts, uncles, grandparents -- families of children with ASD were deeply thankful, as they were when family members accepted and advocated for their child.
Still, there were many barriers to typical family interactions. A child's need for routine or quiet or a place to decompress could make travel to someone else's home a trial, all the more so if a boisterous, socially demanding event like a birthday or wedding was in store. Some parents told us that family functions could become utterly exhausting, as they worried over potential tantrums or other debacles. "I could not go to family holiday meals like a normal person," explained one mother. "I could barely carry on a conversation with anyone for having to chase my child all over the house to prevent disaster from occurring."
For many, the effort became too much, and they began to avoid stressful family visits. "Our relationship has suffered because we are out of circulation and have neglected extended family functions," one father told us.
Not being able to participate in family events was one thing. What was even more difficult in some instances were critical remarks from family members, some of who did not believe a child had an ASD. If criticism from strangers was hard to bear, this was even harder. "My mother feels that we as parents have failed to discipline our children," said one frustrated mother. "She attributes all of my autistic daughter's bad behavior to our failure as parents, and none of it to autism."
Another mother said, "My family does not believe in ASD, so they do not agree with finding her services, and feel that her 'out of control' behavior simply shows my lack as a parent. They believe I am pretending she has issues so I can get attention. Never mind the flow of professionals we work with weekly to help her."
Parents sometimes reported that advice came with the criticism, usually about taking a harder line because the child was viewed not as struggling with a disability, but as a willful brat who "needed spanking." This view was associated with deteriorating relationships, as the parents with a child on the autism spectrum avoided those who clearly did not understand. "My family has difficulty dealing with my daughter's behaviors," said one father. "They cannot see beyond her apparent hostility and arrogance. We don't see them anymore."
Sometimes parents avoided their relatives who didn't understand their child's situation; other times, the relatives avoided them, either because they viewed the child as a brat or because they were simply uncomfortable and unsure about how to interact. "For awhile things were really bad with one of my sisters," one mother said. "She didn't want her son around mine." Said a father, "It is hard to watch family members offer care to other children in the family, yet when we need help, no one is available. Finally, you just quit asking and move on."
Just as with friendships, parents became very focused on who their real supporters were. A mother who had been through a lot explained, "Priorities are much clearer. There is little time for trivial issues. We have eliminated negative family relationships, and in the end this has created a more positive family environment." Said another, "Some relationships I thought were strong completely disintegrated; other family members I expected to have trouble with surprised me with their kindness and understanding."
It was not uncommon for relatives to go through their own journey, from not accepting the autism diagnosis, to recognizing its validity, to learning how to interact, to advocating for the child with ASD. (As you can see at any autism fundraising walk, relatives of all kinds can and do rally on behalf of children on the autism spectrum.) Some relatives, clueless in the beginning, became supporters as the years went by. "My mother was unsympathetic at first," reported a mother with two children on the spectrum, "and because she worked to exclude my youngest -- the most-handicapped child -- from family events, I stopped speaking to her for a great deal of time. However, she came around and my family of origin is now of phenomenal support, including my mother."
The Couple Relationship
Many hurdles face any modern couple with children. They must somehow balance work and family demands while getting the bills paid, the laundry done, the meals cooked, the dishes washed, and the homework handled. For couples with a child on the autism spectrum there are many additional challenges. For one thing, they must somehow cope with an array of extra child management tasks such as investigating treatments, finding providers, wrestling with insurance companies, getting children to frequent appointments, or preparing for and attending Individualized Education Program (IEP) meetings. For another, there is the emotional toll involved when any couple learns that their child has a disability. How they cope and adapt certainly has implications for the health of their ongoing relationship.
What did mothers and fathers participating in the IAN Research project report about the impact of having a child with an ASD on the couple's relationship? Many described very positive and very negative effects on their marriage or partnership, both simultaneously and over time. Still, when forced to choose, 60% of mothers and 54% of fathers said that having a child with an ASD resulted in a "somewhat" or "very negative impact" on the couple relationship. (See Figure 3.)
It is heartening to note that research has not shown that parenting a child with a disability always has an overall negative effect on the parents' relationship. Despite all the difficulties, couples with a child with an ASD have been shown to be no different from typical parents when it comes to reports of spousal support, respect for partner, or commitment.7 Another encouraging fact: we could find absolutely no support for the 80% divorce rate for families with a child with ASD commonly cited around the autism community. 8 9 A study looking at divorce rates for families of children with assorted disabilities found an average increase (over the rate for couples with non-disabled children) of only 5.97%. 10 An Easter Seals' survey of families with a child on the autism spectrum, moreover, found parents of a child with an ASD to be less likely to have ever been divorced than the parents of a typically developing child. 11
(The IAN Project hopes to launch a questionnaire at some point that will permit IAN families to tell us about their experience. How many parents are still with the other parent of their child with ASD? If they are not together, to what extent do they feel the child's ASD played a role?)
What areas of marital difficulty have researchers described? In one study, couples with a child with an ASD reported less relationship satisfaction and less social support than did parents of typically developing children.12 Another study looked at families with a child with a developmental disability, a mental health problem, or no issue at all. The researchers studied these families over a number of years in order to see how they adapted and coped over the life course. They discovered that parents of children with developmental challenges had lower rates of employment and social participation, but were the same as "normal" couples when it came to marital status, physical health, and psychological well-being. Those with a child with a mental health problem fared somewhat worse. Although they also were the same as "normal" couples when it came to marital stability, they experienced more physical problems and depression. 13
It should be noted that some children with ASD also have mental health problems, such as anxiety or depression.14 15 16 17 It may be that the parents of children with both ASD and a mental health issue struggle even more than those of children with ASD alone.
One issue frequently mentioned by IAN parents was a dramatic lack of couple time...and being too exhausted to make the most of it when there was time. One mother said, "We both share a deep love for and dedication to our son, but we have no time whatsoever for each other. My husband works two full-time jobs to compensate for my staying home, and to compensate to some degree for the amount of damage to the house that our son's behavior causes."
"It is tough on my husband that my son requires so much of me," one weary mother admitted. "And when I have time for my husband, I am often too tired (or just not in the mood) for intimacy." Another mother also expressed how hard it was to devote any time to the husband-wife relationship. "My husband is very supportive of me and works hard to provide for me and our children. However, it is a challenge to share intimate moments. I think that he doesn't think that he is a priority for me."
What did IAN parents identify as a cause of marital conflict? Two issues that stood out were the division of labor -- with mothers feeling they bore much more of the child management burden -- and any one member of the couple's denial of the ASD diagnosis.
Conflict over the household division of labor is not uncommon even among couples who do not have a child with a disability. 18 For couples that must manage the many additional tasks involved when a child has special needs, the issue can become thornier. In a study of couples with a child with Down Syndrome, mothers said they performed the bulk of child-focused and household tasks, and were dissatisfied with the unfair division of labor.19 On the other hand, women taking part in some studies admitted that at times they blocked fathers from a larger role, feeling the mothers were more in tune with the child, or otherwise more qualified to meet the child's needs.20 21 Speaking of his marriage as "doomed to fail," one IAN father said, "When we were together she wouldn't allow me to work with him as if she felt I was taking away from her."
In a study of Australian couples with a child with high functioning autism, fathers tended to view the day-to-day work of child raising as their wife's territory; viewed the largest personal impact on them as arising from the indirect effect of having a child with a disability on their relationship with their wife; and benefitted from having a life outside the home, in the work place. One father taking part in the study said, "A lot of the burden tends to be put on the mother because the father is working... The father essentially has respite care five days a week." A few fathers admitted escaping from the situation at home by working more and more hours. 22
Of course, if the mother is the one staying home, she will likely bear the brunt of a child's difficult behaviors and the social isolation that can result. Gray did note that mothers were the most likely parent to experience emotional distress. Another study, this one examining the differences in stress and coping for 103 parents of children with Asperger's syndrome and nonverbal learning disorders, likewise found that "mothers had higher rates of stress related to family problems and pessimism about their child's future, higher rates of antidepressant use, and higher rates of therapy use than did fathers." 23
One of the Australian mothers in Gray's study said: "Fathers do go off to work... They don't have to think about autism... Mothers have to do that. They have to take their kids to the doctor and they have to deal with teachers and they have to deal with the neighbours if the kid hoses the neighbour's cat..." 24 Echoing the same sentiments, an IAN mother told us, "Sometimes my husband doesn't understand how hard and how much stress raising an ASD child is because all he has to do is work and I do everything else."
Although some IAN fathers were deeply involved in meeting the needs of their child with ASD, to the point of giving up a career to stay home, others were not. It is interesting to note that researchers looking at parents of children with health issues found that one strategy employed more often by fathers than mothers was avoidance. "The avoidance strategy mainly involves evading, escaping from, or denying the problem," they reported. 25 In their comments, IAN parents frequently mentioned a refusal to accept the ASD diagnosis on the part of their spouse as a huge problem and source of disagreement. This was not escape to the work place, but escape from the reality of the situation.
One mother said, "My husband was in denial for years and still is to some extent. He also did not want our son to get therapy of any kind. I had to do it behind his back at first and he never went to meetings with doctors or the school...." Sometimes a parent could simply not cope. One mother said of her child's father, "He couldn't deal with it. He took off." Another reported that her husband declined into substance abuse after the diagnosis, while yet another related that her husband left as soon as the pediatrician suggested their child be evaluated.
Some parents told us they had come to believe their partner had a previously unrecognized ASD, which further complicated matters. "My son's father possibly has an ASD himself, and depression," said one mother. "He refuses to accept his son's diagnosis and refuses to get the help he needs himself so I have been the only parent in the house to take responsibility for my son's care emotionally, physically, and educationally. So to say there is resentment towards his father is an understatement. This has had a very negative impact on our marriage.... We have stayed together because financially it would be impossible for me."
This last statement serves as a reminder that couples do not always stay together because they are content. Sometimes they stay together because of economic necessity. Divorce rates only tell part of the tale.
On the other hand, some couples did work through issues of denial with time, and their stories were much more hopeful. "I spent many years trying to convince my husband that our daughter was more than 'eccentric,'" one mother shared. "She has many gifts and he was afraid that acknowledging a problem would undermine her gifts. I felt we needed to learn how to help her better. My insistence on tests and therapies clashed with his need to think she was typically developing. This almost destroyed our marriage, and sent us to marital therapy. However, now we have a realistic diagnosis and we are on the same page. When we advocate for her needs, we are a wonderful and effective team. This effectiveness has brought us closer."
It is encouraging to note what recent research has shown: Families of children with disabilities are more resilient, and individuals and couples more able to adapt and thrive, than many people give them credit for.
It was once assumed that having a child with a disability would result in ongoing family suffering. "Until the 1980s," wrote researchers Risdal and Singer, "the metaphor that influenced research about parents of children with developmental disabilities was that of a family tragedy." 26 This assumption was challenged as researchers began to focus on family strengths, differences in coping among families, and families' positive views of their child and themselves. Families, it turned out, could be extremely resilient. 27 28 29 30 They are able to "respond with strength and fortitude," not just surviving, but thriving, as they face the challenge of raising a child with autism or another disability. 31 Hastings and Taunt, who looked at a number of studies exploring this aspect of parenting a child with a disability, noted very positive perceptions on the part of parents facing this life situation. 32 These included:
- Pleasure in providing care for their child
- Their child as a source of joy
- A sense of accomplishment in having done their best for their child
- A sense that their marriage or family had been strengthened by what they had gone through together as a result of the child's diagnosis
- A new sense of purpose in life
- A sense of personal growth (because they had become more compassionate, less selfish, more tolerant)
- Increased spirituality
- A new perspective on what is important in life
Like other parents of children with disabilities, some IAN parents told us they had come through the distress and grief of the initial diagnosis to adjust, celebrate their child, and thrive. One father told us his marriage had been brought back from the brink of a break-up because of his son's diagnosis: "Before our son was born my wife and I were on the fast track to divorce: constantly arguing about money and nitpicky stuff. After he was diagnosed, all of our money went into treating him so there was no longer any money to fight about. Our marriage is stronger now because we spend our energy getting him better and being good parents for him and his sister. He has taught us a lot about what's important in life: to be happy just to be able to live a simple life and survive from one week to the next."
Similarly, an IAN mother told us: "Most of the time we felt like no one else understood what we were going through. We felt like all we had to depend on was each other. It made us even closer because we made our marriage top priority. We knew it wouldn't do our son any good to lose the security of both parents. We decided not to let ASD be all our family was about."
This ability to redefine the situation, celebrate a child's specialness and gains, embrace new philosophical and spiritual viewpoints, and appreciate life in a new way is what Scorgie and Sobsey called a "transformational outcome." 29 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.