IAN Research Report #14 -- APRIL 2010: Grandparents of Children with ASD, Part 1
Connie Anderson, Ph.D.
Date First Published: April 6, 2010
More than 2,600 grandparents from across the United States have taken a survey about having a grandchild with an autism spectrum disorder (ASD). What insights have they shared?
When a child is diagnosed with an autism spectrum disorder (ASD), the impact is felt beyond the nuclear family. Grandparents, too, cope with grief, search for answers, and try to define their role in this new situation. They may work hard to build a relationship with their affected grandchild and to support their adult child, the parent. Experiences are remarkably diverse, but one thing is clear: grandparents often play a major part and experience their own stresses and triumphs in these families.
We decided to find out about grandparents' experiences soon after we launched the Interactive Autism Network (IAN), the nation's largest online autism research project. Thousands of children with ASD, their siblings, and their parents were participating in the project, but there was no role for grandparents. Many called to ask if there was some way they could contribute. "I know my grandchild so well," they told us. "Don't you want to know what I know?"
We very definitely did want to know. The IAN team set out to develop a survey that would capture grandparents' knowledge and experience. Based on the input of grandparents who had contacted us and Bonnie Gillman of the Grandparent Autism Network (GAN), we developed a pilot survey. Forty volunteer grandparents filled this out online, offering their feedback so that we could improve it. The final web-based Grandparents of Children with Autism Spectrum Disorder Survey was launched on October 5, 2009, and generously promoted by Autism Speaks and the AARP. We now present Part 1 of a two-part report based on grandparents' responses.
Grandparents of Children with ASD, Part 2, which explores the emotional, financial, and care giving contributions of grandparents, is now available.
Please Note: These Findings Are Preliminary
We were humbled by the overwhelming response to the Grandparents of Children with ASD Survey. In the span of just 8 weeks, more than 2,600 grandparents completed it, telling us both about themselves and up to three grandchildren with an ASD. They came from all fifty U.S. states and the District of Columbia, and every kind of locale, with 17% from cities, 23% from rural areas, and 60% living in the suburbs. They represented a wide age range, from people in their 40s to people in their 80s, and had varied educational backgrounds, with the largest group (38%) having had "some college or an Associate's degree." (See Figure 1.)
Nearly 95% identified as white, with 2% Black and 3% claiming other racial identities. In addition, 4% told us they considered themselves to be Latino (which is an ethnic rather than racial category). About 40% were retired in a traditional sense. Another 37% were still working in pre-retirement jobs, while 13% were retired but working post-retirement jobs. Others had always worked inside the home. (See Figure 2.) Despite their diversity, these grandparents shared one thing in common: they had at least one grandchild with an ASD.
We found that 83% of our respondents were grandmothers, while 17% were grandfathers. We were very glad to hear from more than 400 grandfathers, as many research projects focusing on children have a difficult time getting male parents to participate for a variety of reasons. (For example, among parents participating in the IAN Research project, mothers outnumber fathers by nearly 8 to 1. See our Research Report on Fathers Participating in IAN.)
It is interesting that two-thirds of participating grandparents were maternal grandparents (that is, their daughters were the mothers of their grandchild with ASD), while only one-third were paternal grandparents (that is, their sons were the fathers of their grandchild with ASD). There are many theories about why maternal grandparents may tend to be more involved in grandchildren's lives. In this instance, it may be that mothers tend to be more involved in searching for ASD information than fathers and so were more likely to find the Grandparents Survey and tell their own mother about it.
The Adult Child (Grandchild's Parent)
One chief concern of grandparents was the wellbeing of their adult sons and daughters who were parenting a child on the autism spectrum. (See Figure 3.) The support they provided was often not just for their grandchild's sake, but to alleviate the burdens on an adult child.
"We try to help my daughter and son in law cope, and to make their lives more bearable by giving them as much support and money as we can," said one grandmother. Another lamented for her son, saying it was hard to watch him deal with all the things his own little boy could not do. "The greatest challenge is knowing I will not be on this earth to help my son cope as his son grows to be a teenager and faces all the problems he is going to have."
Nearly 90% felt that the experience of facing their grandchild's situation together had brought them and their adult child closer. Many expressed pride in their child's strength and commitment as he or she faced raising a child with an ASD. One retired grandmother expressed joy at "seeing how my son has become an incredibly responsible and nurturing father." Another said, "My daughter-in-law has become a very strong advocate and caregiver for her sons. I am so proud of and awed by both my son and daughter-in-law for their strong commitment to their children."
Of course, there were also challenges. One of these --and it is faced by all grandparents, regardless of whether a grandchild has a disability -- was to decide when and whether to give an opinion regarding an adult child's parenting. "My son and his partner are dealing with my grandson's autism quite capably," said one grandmother. "As a result, my husband and I are challenged to remain on the sidelines and only give an opinion if asked."
Sometimes, grandparents did hold strong opinions, and came into conflict with their adult child and son- or daughter-in-law because of it. There were instances where a grandparent felt a child should be evaluated, but a parent refused. There were situations where a grandparent thought a certain treatment was necessary, but the parent wouldn't act to access it, as well as times where a grandparent feared a treatment was potentially harmful, but was helpless to stop it.
In some cases, grandparents feared the adult child was not coping well, and so was unable to do a good job and provide the structure or feedback that the grandchild needed. "The child's parents have their own mental health issues and really don't parent this child in the way he deserves," said one grandmother. Said another, "I have too little control over the parents and their failure to deal with my grandchild by obtaining the help he needs and modifying their lifestyle to accommodate him (i.e. control household noise, try to communicate with him). I fear that his opportunity to adjust to his illness in a meaningful way has been severely compromised by the delay in seeking substantive treatment."
For grandparents, this was a painful position to be in. About 6% of the grandparents told us that a family situation has become so untenable they had taken on the role of parent. About 1% of our respondents were their grandchild's foster or adoptive parent, while another 5% told us they were primary caregiver in fact although this had not been made official.
Whatever the case, it was stressful for families when not everyone was in agreement regarding a child's ASD. We specifically asked grandparents about the issue of denial: in themselves, their partner, their adult child and his or her partner, and others. About 6% told us they felt they had, at some point, been in denial about their grandchild's ASD. (Of course, grandparents still in denial would be unlikely to take our survey, and are probably not represented in this report.) (See Figure 4.)
About 16% felt their adult child, the grandchild's parent, had been in denial at some point, and even more (26%) felt their child's spouse had been in that state. Interestingly, grandparents were more likely to view sons or sons-in-law as having been in denial than daughters or daughters-in-law. Similarly, 23% felt their grandchild's other grandparents had had trouble accepting the child's diagnosis. It is distressing to note that nearly 20% thought their grandchild's pediatrician had been unable to see or accept the child's ASD.
Many grandparents played a vital role in early recognition of their grandchild's ASD. Not only did nearly half the grandparents say they had provided support to a parent who was raising concerns, but 30% told us they were the first to notice a problem with their grandchild's development. (See Figure 5.)
It may be that parents, especially first-time parents, are less likely to perceive that something is amiss with their child than grandparents are. They may not have had any previous exposure to infants or toddlers, while the grandparents have.
"I was the first to put a name to his condition," said one grandmother. "I knew earlier, but it was extremely difficult to tell your child that you believe her child has autism." Many described this uncomfortable dilemma: a feeling that something was wrong combined with uncertainty about whether to express it. One grandmother told us, "I noticed signs when he was 2, but didn't know how to voice my concerns without hurting his parents. So we prayed for someone they would believe to notice. He entered pre-school two half days a week in September, and they noticed by October." A third grandmother said, "He was three and a half months old the first time I saw him and my initial response was, ‘What is wrong with him?' My daughter said nothing was wrong; we were scaring him. The fact is that he could not tolerate anyone touching him, he screamed constantly, and was not eating well... I didn't know what was wrong, but 3 month old babies love all the attention and love they receive. He could not tolerate any of it."
Some grandparents did say something to their adult children, although this had its own consequences. "Back when I suspected it, my son got bitter with me, and still is," said one grandmother. "He copes some days. It's very hard for him..." Said another, "From before the diagnosis, I knew what it was, but had a very hard time communicating that something was wrong to my daughter who didn't understand the subtlety of the symptoms and thought I was seeing ghosts."
It was far easier for those who supported a parent who was already taking action. They could validate concerns, offer encouragement, and provide valuable insights. Some accompanied their adult child to evaluations, or lent moral, financial, and other kinds of support. Some provided valuable input in the form of memories of a child's behavior, as when a grandmother brought out photos of her grandson tip-toeing and twirling when he was two and a half -- a behavior the parents had forgotten but which was later viewed as support for a diagnosis of autism.
Support and Coping
Many grandparents reported that they felt supported by their partner or their friends as they coped with the situation of having a grandchild on the autism spectrum. Of those who were married or in a committed relationship, 92% said they felt their spouse or partner supported them "always" or "most of the time." Similarly, more than 70% reported that they felt most of their friends or relatives supported them. This may help explain why so many told us that they had adjusted to their grandchild's diagnosis and were doing "very" or "fairly" well. (See Figure 6.)
Still, grandparents were clear that this was no easy path to walk. They worried for their grandchild with ASD, unaffected siblings, and their adult children. Asked about greatest challenges, one grandmother said it was very hard "...watching my gentle grandson suffer from the effects of autism. He cannot sleep through the night. He struggles to verbally communicate. My daughter is suffering from depression. Doctors are ignorant about what can be done for the children. Insurance doesn't cover therapies, e.g., speech, PT, OT. There is so much financial strain on families."
Some did find they needed extra assistance, whether from a support group, a clergy member, or a therapist. A person who had been through similar experiences could be a big help. One grandmother told us, "I depend on a mother who has a child older than my grandson and has given me great insight on what to expect. Professionals are not very helpful; most of the time they do not understand. It is better to seek people that are going through what you are going through in a personal way."
Like their grandchild's parents, grandparents were often coping with grief, anxiety, anger, or guilt. Said one grandmother, "One challenge is keeping my sadness to myself so I don't further upset my children, and not giving advice or information when I know my children are stressed enough. I have problems relating to my autistic grandson - I feel sad and frightened by his autism and I am afraid he will go out of control and I won't know what to do. There is also lots of guilt since I live 2 hours away..."
Others were stressed because they were providing hands-on help in a tough situation. "Babysitting an autistic child is extremely difficult," one grandmother admitted. "My grandson is big for his age - he's 6 years old and not potty trained. He is not always cooperative, but does not know he hurts me when he head butts (not often - but I think he cracked my tooth once)."
Some expressed frustration with a world that seemed indifferent or hostile to their grandchild and his or her unique way of being. One grandmother commented, "Our grandson will soon be 9 and I worry that other kids will make fun of him and hurt his feelings. I would like to see more information given to the general public so that they can understand these beautiful angels among us. I realize it's uncomfortable to witness a temper flair up or meltdown, but if people were informed that this behavior is not a brat having a temper tantrum but a child struggling to cope with outside stimulus, it would be helpful to the caregiver to have that silent support instead of judgmental looks."
The Grandparents' Families and ASD
For some of the grandparents taking the survey, ASD was not limited to one grandchild; 15% had two or more grandchildren on the spectrum. Of those who told us they had more than one grandchild with ASD, two-thirds told us these grandchildren were siblings, while the other third reported these grandchildren were cousins. This information may prove of interest to researchers studying genetics in autism, as will the data the grandparents provided about their adult children and themselves.
Some grandparents were adamant that no one besides their grandchild had ever had ASD in their family. "It is not genetic!" one grandparent declared. Others mentioned that there had been no ASD, but there had been other conditions such as bipolar disorder, obsessive-compulsive disorder, or learning problems.
Three percent reported that they actually had a child who had been diagnosed with an ASD, while an additional 8% said they suspected one of their adult children should have received such a diagnosis, but hadn't. One grandmother said, "I have a 30 year old son that I think has ASD, but thirty years ago all this information was not out there like it is today. He is the uncle of my grandchild with ASD." Said another, "My son, who was recently married, shows symptoms of Aspergers' Syndrome and always has. We just didn't have a name for it."
Sixteen grandparents (0.6%) even said they had received an ASD diagnosis of their own, while another forty-nine (1.9%) said they believed they had an ASD, although it had gone undiagnosed. (See Table 1.)
"I don't know," said one grandmother, "but I don't like people, or noise. I'm prone to headaches. I'm shy, and I don't fit in. I'm very intelligent, but I'm a loner, and prefer technology." Said a grandfather, "I was called 'mildly autistic' in the 60s, but I thread the needle for Asperger's." Some suggested they had mild ASD traits, but not enough to warrant a diagnosis.
Family history, in addition to genetics samples from families, may help researchers untangle the genetics of autism, including whether different types of ASD are genetically different. Might there be some types that are very "heritable," that is, easily inherited, while there are others in which genetics plays only a minor role? Researchers are still working to answer such questions.
In Part 2 of our report, we describe the contributions and sacrifices grandparents make in support of their grandchildren on the autism spectrum, as well as the deep and special bonds that form between children with ASD and their grandparents.
"My granddaughter has given me a greater insight into who I am and my capacity to love. She is my heart's delight." --a grandmother speaking of her grandchild with ASD
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