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IAN Research Report #15 -- APRIL 2010: Grandparents of Children with ASD, Part 2

Connie Anderson, Ph.D.
IAN Community Scientific Liaison

Date First Published: April 30, 2010

“My grandson with autism loves me more than any individual has ever loved me in my life, except possibly my wife and mother. One on one, he is the most loving person I have ever known.” – a grandfather

The Interactive Autism Network (IAN), the nation’s largest online autism research project, launched a survey for grandparents of children with autism spectrum disorders (ASD) in October 2009. More than 2,600 grandparents from across the United States completed the survey, sharing their experiences and insights. In Part 1 of our Grandparents of Children with ASD Report, we discussed how much grandparents worried for their grandchildren as well as their adult children who are parenting a child with ASD, and explored the role grandparents often play in identifying a grandchild’s autism. In Part 2 we share what grandparents told us about their contributions to their grandchildren’s lives, in emotional, care giving, and financial terms. We also describe the joys and challenges grandparents experience in their relationships with their grandchildren on the autism spectrum.

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 grandparents of children with autism spectrum disorders (ASD) from the United States who chose to participate. They may not generalize to the larger population of grandparents 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 The data have not been peer-reviewed -- that is, undergone evaluation by researchers expert in a particular field -- or been submitted for publication.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 involvement.

The Grandchildren

Grandparents were eager to tell us about their grandchildren with ASD, and what they meant to their lives. Of the more than 2,600 who had completed the “grandparent” portion of the survey, more than 2,000 went on to answer questions about specific grandchildren with ASD. Of these, 91% told us about one grandchild with an ASD; 8% told us about two grandchildren with an ASD; and 1% told us about three.

Boys with ASD outnumber girls with ASD by between 4 and 5 to 1, so it is no surprise that we heard about more grandsons than granddaughters. 1 2  The ratio of grandsons to granddaughters was 4.8 to 1, similar to what has been reported in the autism literature.

We asked grandparents what type of autism spectrum diagnosis a grandchild had received. Some grandparents did not know the specific diagnosis. Of those who did, more than half reported that their grandchild had autism, with the rest reporting a diagnosis of Asperger syndrome, pervasive developmental disorder not otherwise specified (PDD-NOS), or a generic autism spectrum disorder (ASD) or pervasive developmental disorder (PDD). (See Figure 1.)

Figure 1.
Pie graph showing grandparents' report of grandchildren's ASD diagnosis.

The proportion of children with a diagnosis of autism is actually larger than what we have found for children participating in the IAN Research Project overall. This may be because some grandparents aren’t informed of the specific diagnosis written down in a medical file, especially if it’s one of the stranger-sounding ones. Parents might choose to say a child has "mild autism" instead of "PDD-NOS," for example.

A number of grandparents (about 1.5%) told us that they strongly suspected ASD in a grandchild, but the child had not received a diagnosis yet. We included their comments and experiences because we did want to hear about circumstances where a family was having a hard time getting a diagnosis, or where a parent was refusing to get a diagnosis. We did not include their data in our graphs and charts, however, as their grandchildren had not yet been definitely placed on the autism spectrum by a professional.

Grandparents could report on grandchildren of any age, and they did. Grandchildren ranged in age from 1 year old to 44 years old, although 77% were between the ages of 4 and 12. (See Figure 2.)

Figure 2.
Pie graph showing grandparents' report of ages of grandchildren diagnosed with ASD.

Whatever the diagnosis or age, a child with an ASD and his or her family had a variety of needs, and grandparents were often called upon for assistance.

Grandparents’ Contributions

There were many ways grandparents could help a grandchild with ASD, as well as his or her siblings and parents. Whether this was in the form of emotional support, money, or hard labor, grandparents’ contributions were vital to many families.

What role a grandparent could play was determined in part by distance: how close were they to their grandchild? As shown in Figure 3, 9% reported living in the same household as their grandchild, with another 48% living within 24 miles. (Of course, it is likely that grandparents who lived closer, and had more frequent contact, were more likely to take our survey.) Please note: we excluded grandparents with legal custody from this and all remaining graphs, as they are a special case and will be discussed separately.

Figure 3.
Pie graph showing grandparents' report of the distance they live from grandchildren with ASD.

More than 7% said they had actually combined households with their grandchild’s family so they could help them "manage all that is involved with his or her Autism Spectrum Disorder," while 14% had moved closer (but not into the same home) for the same reason.

Caregiving and Transportation

Some grandparents told us their adult child needed to work, attend school, or had been ill, and so they were taking on a great deal of the care giving. In all, 34% reported providing child care, and 18% reported providing transportation to school or appointments, at least once a week, with those who lived with or near their grandchild providing substantially more. (See Table 1.)

Table 1.

Care Giving and Transportation by Distance

Non-Custodial Grandparents

 

 

 

 

Live 24 miles or less from grandchild

Live 25 miles or more from grandchild

Overall

CARE GIVING (n=2146)

at least once per week

56%

6%

34%

TRANSPORTATION (n=2153)

at least once per week

29%

4%

18%

“My grandson and his mother lived with me for the first 10 years,” said a grandmother who often took on care giving tasks. “Then they moved only a block away so I can still help care for him. I have taken him to school every day from preschool, grade school, and high school, and have attended field trips, programs, anything that he is in.” Such care giving was not always easy, as described by another grandmother: “As I am in my senior years, sometimes finding the strength and/or energy to just keep up with our grandson is hard... It's difficult to take him out to public places, which keeps my husband and me home, too, as our daughter (mother of the child) is divorced from the father, and she needs to work. They live with us, full-time.”

Grandparents were often involved in treatment decisions for their grandchildren. More than 70% said they had played some part in treatment decisions made for their grandchild, with 22% saying they were very involved, or had even taken the lead on decisions regarding treatments. (See Figure 4.)

Figure 4.
Pie graph showing how much grandparents are involved in treatment decisions for their grandchildren.

Many grandparents spoke of another important "caring" task: the need to pay extra attention to unaffected siblings who might be feeling neglected, confused, or angry at the energy being invested in a brother or sister with ASD. "We try to help his brother who is fine but is having a hard time trying to understand why he doesn't speak, but screams,” one grandmother confided. “Our grandson with ASD is now 8, and it is becoming more profound for our little guy who is 6 to grasp why his brother is so different.”

Financial Support

Raising a child with ASD is even more expensive than raising a typical child, and grandparents often took steps to support the grandchild’s family in financial terms. What did they spend money on? We asked about specific needs, both general ones and those related directly to having an ASD. (See Table 2.)

Table 2.

Non-Custodial Grandparents

Pay all, a great deal, or a moderate amount of this expense

GENERAL ITEMS

 

Clothing

28%

Childcare

26%

Food

20%

Other Health (co-pays, etc.)

17%

Housing

16%

Health Insurance

4%

 

 

SPECIAL NEEDS (if applicable to family)

 

Special Camps or Summer Programs

20%

Educational Program

16%

Other Therapy or Counseling

15%

Legal or Advocacy Costs

14%

Applied Behavior Analysis (ABA)

13%

Speech Therapy

12%

Social Skills Training

12%

Occupational Therapy

10%


A great many grandparents were helping pay for general expenses such as clothing (28%), child care (26%), and food (20%). In addition, grandparents contributed funds to help pay for autism-specific needs such as a special summer program (20%), educational program (16%), therapy or counseling (15%), legal or advocacy costs (14%), or applied behavior analysis -- a key early treatment (13%).

Not all grandparents contributed money to meet their grandchild’s autism-related needs, but 57% did. Fully 25% reported spending up to $99 per month, with some paying even higher amounts. There were some grandparents spending more than $500 per month. (See Figure 5.)

Figure 5.
Pie graph showing amount grandparents contribute to help fund needs of their grandchildren with ASD.

“We are paying for services that aren't covered by health insurance,” explained one grandfather. "We have spent our retirement and would do it again to benefit our granddaughter. We have her with us 3 to 4 days a week. This was a shock to our family; her parents were in their early 20s and they weren't prepared for a child with special needs.”

Some grandparents were providing care so adult children could work; some were working to provide funds themselves; and some were doing both. Those who were trying to juggle work, saving, spending, and care giving found this as difficult as parents have. "My daughter works full time and then works every Saturday and Sunday all day and one night in a store to pay for all the extra expenses," a grandmother explained. "I try to contribute financially to take off some of the pressure they experience every day trying to pay bills, and keep things going. I work also, and have some flexibility so I can help them out when kids are sick and out of school, but I pay the price because I should be making more money and putting it away for retirement."

Of course, some grandparents did not have the means to pitch in money towards treatments or other autism-related expenses. "I find the greatest source of stress is dealing with the frustration of not being able to provide the financial resources necessary to obtain the help my grandchild desperately needs," said one grandmother before expressing her unhappiness with a system that leaves families on their own when it comes to paying for vital treatments.

Grandparents who had taken on the parent role, as adoptive or foster parents or guardians, faced the full brunt of the financial burdens associated with ASD. "We have spent over $300,000 over the last 4 years with ABA therapies and other expenses trying to get the best treatments for our grandson, now 6 years old,” said one grandmother in this situation. "My husband has to go back to work now after we have exhausted our savings and retirement. What are we to do when we run out of money? Our friends do not understand the challenges we face every day."

Such grandparents often faced the loneliness and social isolation described by many parents, and especially mothers, of children with ASD. One grandmother who is raising her grandson with autism, confided, "The greatest challenge is not being able to do the things I enjoy. Not having time to myself for more than a few hours. Not being able to go eat at a sit down restaurant. Not being able to find a babysitter..."

As can be imagined, many grandparents were making substantial sacrifices on behalf of a grandchild with autism and his or her family. Of those in the “traditional” grandparent role, more than 22% reported going without something they had hoped for in order to provide for their grandchild's financial needs; 18% had become primary babysitter so their adult child could work; 11% had raided retirement funds; and 8% had borrowed money. (See Figure 6.) A substantial 60% had made sacrifices not provided in our response choices, such as working more hours, taking on a second job, or leaving funds in a special needs trust.

Figure 6.
Bar graph showing grandparents' sacrifices on behalf of their grandchildren with ASD.

It is clear that any attempt to measure financial or other impacts of autism on families will be incomplete without including the grandparent generation's contribution and experience.

Relationships with Grandchildren on the Autism Spectrum

Whatever a grandchild's age, gender, or level of functioning, grandparents found themselves in relationship with unique individuals who could be exhausting, difficult, and unpredictable...or loving, insightful, and delightful.

The Challenges

Grandparents of children with ASD had to cope with many daunting difficulties, both physical and emotional. The first of these was taking in the diagnosis, and what it might mean for a grandchild and his or her family. “The initial acceptance was the greatest challenge,” one grandmother reported. “As a grandparent, you never want them to have to struggle so hard.” Said another, “It is overwhelming, all the obstacles my daughter and granddaughter must endure. I feel lost and inadequate on how to face it head on. So many dreams of her future have been washed away with this.”

Some grandparents who lived far away and were unable to play an active role felt guilty as well as sad that they didn't have the day-to-day chance to learn to interact well with a grandchild who had a different way of being. For those who were able to spend more time face-to-face, the effects of autism were more direct.

Communication was one key issue. Sometimes, the barrier was a child’s inability to speak; other times, it was a child’s unusual way of relating. Either way, a grandparent had to learn to adjust. “Communicating with my grandchild remains my greatest challenge,” said one grandmother. “I love him with all my heart! He is a sweet, good-natured six-year old boy. We often sing to communicate. However, I would love to actually have a conversation with him.”

Of course, communication issues were often just the tip of the iceberg. Caring for a child who might be non-verbal, physically aggressive, prone to meltdowns, very selective about food, resistant to sleep, or prone to wander beyond safe spaces could be extremely tough. “My grandson is nine and is severely challenged by his autism,” one weary grandmother told us. “We are the main providers of respite for him, and as he’s gotten older the care has become more difficult. I compare this to getting hit by a train and continually dealing with trying to survive it. The biggest issues concerning the care are: He's not potty trained, he's non-verbal, and very physical. When he's upset, he'll have meltdowns where he'll bite, scratch, and pinch. Perhaps the biggest challenge is the continual need to keep him safe... He has no sense of danger at all, and requires constant watching.”

Children with ASDs at all levels of functioning can experience tantrums or meltdowns, and these were commonly mentioned as a bewildering aspect of ASD by grandparents. “He can be very sweet or totally defiant,” said one grandmother of her grandson. “When he is defiant, I don’t feel I have the skills to control him.” This became more and more the case as these children grew. “My grandson is 23 years old and 6 feet tall,” stated one grandmother bluntly. “When he is upset, I cannot handle him.”

Tantrums came with some other burdens. For one thing, grandparents learned they had to maintain calm in harrowing circumstances in order to prevent an already difficult situation from spinning further out of control. This was no easy task.

Many regretted that what should have been fun and easy activities with a grandchild could be overshadowed with anxiety over a potential scene. “Everything becomes a 'project' instead of a fun outing,” one grandmother related. “Simple things are often just too much to tackle...not worth the effort and drama.”

As grandparents came to accept and learn to manage meltdowns, they often reported finding the attitudes of “uneducated and uncaring strangers” more painful than a grandchild’s actual behavior. Like parents of children with ASD, they keenly felt the injustice of bystanders’ critical looks when their grandchild “lost it” in public. One grandmother said it was particularly hard to deal with difficult behaviors when most of her friends “think he is just spoiled.” Echoed another grandparent, “It’s hard dealing with people who have the smug belief that if other parents were like them, these kids would be perfect. Ignorance!”

It was not only meltdowns people didn't seem to "get." A grandmother told us, “He is such a special talented little boy. I hate it when people look at him funny when he talks loudly or acts differently than a typical 7 year old.” Another grandparent found it especially hard to “watch the puzzlement on his face when he says ‘hi’ to someone and they just keep on walking or don't acknowledge his greeting. They don't know what an accomplishment this greeting is for him!”

As is often the case with an “invisible” disability, one burden grandparents had was educating others so they would understand.

More than anything, grandparents found that having a grandchild on the autism spectrum often took a significant and varied emotional toll. Listing just some of her feelings, one grandmother confided, “I’m sometimes overwhelmed and saddened by the long term gravity of my grandchild needing care all his life. I worry about his safety, physical and mental, and about money for his care and education. I’m angry that there isn't more given for hands on help for these children. I’m sad that sometimes he doesn't respond, and anxious because he goes out of control.”

Yet individuals on the autism spectrum often have a number of gifts along with their challenges, and grandparents celebrated each and every one.

Gifts

As those who know them well will tell you, individuals on the autism spectrum are often very affectionate, although in their own way. The stereotype of the cold, rejecting, or socially disinterested person with ASD is often not accurate. Some have less empathy, and some more. Some are very interested in social connection, and some less. Contrary to popular belief, however, a complete disconnect from other people is not the rule.

Many grandparents found their grandchild with ASD to be loving and caring, and felt intensely connected to him or her. “I have a great relationship with my grandson,” said one grandmother. “My challenge is to not let his two brothers know how much more I love him. I think it is because he needs me more.” Said another, “My grandson is the sweetest, kindest soul I know. He feels safe with me because I try to embrace the wonderful qualities he has. I love him so much and wish I could get him the help he needs. He is 11 years old and in Jr. High and he is picked on for his differences. I don't know what to do except tell him that he is awesome, and that I am always here for him.”

One grandfather told us his greatest joy was “having my grandson take my hand as soon as I walk in the door and lead me to something he wants to do." In the same vein, a grandmother said, “The relationship that I have with my grandson is one of my greatest joys. We have a special relationship… My heart nearly burst when he began saying my grandparent name, Baba. If I go for a visit, and he comes running and screaming 'Baba' with a smile as big as Texas, I feel so elated. I can't imagine my life without him. I love all my grandchildren, but he holds a special place in my heart.”

Grandparents rejoiced in these children, and in every gain they made. "My greatest joys have been the success of this little guy growing from a non verbal and non ambulatory 18 month old who was totally uninterested in another human being to a 4 year old who talks constantly, sings, laughs and expresses love. He runs and jumps and actively seeks approval with hugs and kisses," one grandmother told us.

Because their "social software" is not functioning properly, many people on the spectrum do not display some of the more unpleasant characteristics so-called normal people do; they are not usually prone to manipulate others, play mind games, or tell little white lies. Perhaps this is why the terms "beautiful" and "innocent" were used by so many grandparents to describe their grandchildren. Many grandparents commented on the sweetness of their grandchild with ASD, and the child’s honesty. "I know that when I receive a hug or a kiss, it's because he truly wants to give it to me, it's not obligatory," said one grandmother. Said another, "My grandson just lights up and gives me a big hug when he sees me, even though he knows it means that Mom is going out and his routine is upset. The other grandson (who is neurotypical and younger) may say "what did you bring me?", but the ASD grandson says "tickle me, Gramma!"

Many gained an appreciation for their grandchild’s distinctive way of being, and tried to get others to see the child the way they did. These children, they found, had incredibly rich and insightful perspectives on everything under the sun. One grandmother said, "My grandson is the most precious, beautiful little boy I have ever met. He teaches me so much about living in the here and now. He challenges me to be more patient and to see the world in a different way. My joy is to just spend time with him -- he's not easily impressed and I impress him -- what more can I ask?"

A Plea for Understanding...and Action!

Many grandparents responding to our survey wanted the public to know more about ASD, to see and understand their grandchildren on the spectrum, and the adults they would grow into. They felt people didn't really know ASD when they saw it, or have any true appreciation of it, despite all the news stories and publicity. Old Rain Man stereotypes of the autistic savant are warring with new ones of quirky Asperger geniuses, while most people with ASD fit neither mold very well. Will a person who is going to need lifelong support be able to access it? Will a higher functioning individual find understanding in the community so he or she can work and thrive?

"How are these children going to live as they age out of help?" one grandmother asked. "My grandson is now 19, a bright boy but unable to work or live on his own. My biggest fear is that he might have a breakdown in public." She went on to express her anxiety that a misunderstood adult with ASD could end up in jail when he or she should instead receive assistance and understanding. Grandparents of young children spoke of treatments out of reach, school systems out of touch, and research not yet done. They wanted help for their grandchildren and their adult children (the parents), and they wanted answers!

Many had taken action. Nearly 50% had participated in autism walks or fundraisers; 33% had been involved in autism-focused political advocacy; and 31% had attended educational conferences or workshops on autism.

As they educated themselves about ASD, grandparents could become fierce advocates on behalf of a grandchild and all people with ASD. One grandmother declared, "Autism has made me stand up and fight for a cause. I will fight till the day I die for all the help my granddaughter needs... I go to seminars and research biomedical interventions, I research educational strategies. I pushed her parents to get her out of public school and found an attorney to get her into a special school. I have taught my daughter and son-in-law to fight...to be the 'squeaky wheel.'"

Grandparents participating in the IAN Grandparents of Children with ASD Survey have taught us so much, bringing new insights to researchers, professionals who work with people on the spectrum, and the entire autism community. We have learned what a significant role they play in identifying ASD in their grandchildren, and what tremendous contributions they make in terms of care giving, finances, moral support, and advocacy. They have shared their worries for their grandchildren on the autism spectrum, and for the children’s parents, their adult sons and daughters. They have beautifully described the contradictions inherent to ASD: how the diagnosis and its aftermath can be like “being hit by a train,” yet relationships with these grandchildren can be some of the most joyful they have ever known.

In brief, anyone investigating ASD and its impact on families leaves the grandparent generation out at their peril.

Our sincere thanks to all the grandparents who shared their experiences and their stories with us by taking the IAN Grandparents of Children with ASD Survey. Without you, it would not have been possible to highlight grandparents’ voices and contributions in this very special way.

Related Resources and Articles

References

  1. Fombonne, E. (2005). Epidemiological studies of pervasive developmental disorders. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., Vol. 1, pp. 42-69). Hoboken, NJ: John Wiley & Sons, Inc.
  2. Autism and Developmental Disabilities Monitoring Network Surveillance Year 2006 Principal Investigators. (2009). Prevalence of autism spectrum disorders -- Autism and Developmental Disabilities Monitoring Network, United States, 2006. MMWR. Surveillance summaries: Morbidity and mortality weekly report. Surveillance summaries/CDC, 58(10), 1-20. View Abstract

 

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