Marina Sarris

Date Revised: April 21, 2023

Grandma is sometimes the first to suspect.

Nick Juritza sat up and crawled a bit later than usual. “My mom noticed little things about my son,” says Nick’s mother, Kelli Juritza. “She said to me, ‘You know, you might want to get him checked out.'”

Juritza is among several parents in the SPARK autism research study who say that their children’s grandmothers were the first to point out developmental delays that turned out to be signs of autism.

Many grandparents play an important role in the families of children with autism. They may provide advice to first-time parents, emotional support, financial help, transportation to appointments, or babysitting, according to some parents and also researchers.^{1, 2}

More than a decade ago, Connie M. Anderson, Ph.D., conducted the largest-ever survey of grandparents while she was a researcher at the Interactive Autism Network. Anderson’s research suggests that grandparents, just like parents, find both struggles and joys in their relationships with children on the autism spectrum.

Anderson discusses her research and provides helpful advice in this recorded webinar.

What Researchers Know About Caregivers of Children with Autism

Parents, who are typically their child’s primary caregivers, have attracted more attention from researchers than grandparents. Studies show that parents of children with autism experience more stress, have less leisure time, and earn less money than the parents of typically developing children.^3-5

And for some parents, caregiving may extend past an autistic child’s 18^th or 21^st birthday, if their child requires significant support or supervision in adulthood.

Grandparents may worry about two generations of their families, according to a study by Anderson and others.⁶ In that study, 1,870 people responded to a survey about their greatest challenges and joys as grandparents of a child with autism.

The grandparents said that they worried about their grandchildren, as well as about the parenting stress that their adult children faced. “They are never just parents,” one grandparent said, referring to parents of autistic children. “They are caretakers, teachers, therapists, and a million other things.”⁶

Grandparents also shared many of the same challenges as their adult children, according to the study. They change their daily activities to accommodate the child’s needs. They wonder how to predict and manage challenging behaviors, such as tantrums and wandering away in public places. “Even a simple trip out for ice cream can go wrong in a heartbeat,” one said.

Grandparents would like to learn how to bond and communicate with their grandchild: “My greatest joy would be to hold a conversation with my grandson. He speaks some, but it’s more like I’m assuming what he’s trying to say,” one grandparent responded.

A grandparent described her autistic grandson as “my greatest joy and my greatest despair.”

Another grandparent reported difficulty with a grandchild on a daily basis. “We need help ASAP.”

Grandparents Helping Grandparents

Some 15 years ago, Bonnie Gillman saw the need to create a community around grandparents. Her grandson had been diagnosed with autism, and she wanted to learn how to best help him and his parents, who lived nearby.

“There were no books at the time or internet sites devoted to grandparents. My background was in nonprofit work, and my husband was a physician, so I had good access to the medical community. But I needed grandparent input to know how to best help my family, and how to prepare my home to make it comfortable for my grandchild,” Gillman recalls.

So in 2006 she founded the Grandparent Autism Network (GAN) in Orange County, California, where she lives. She held the first meeting, which included dinner, at her home. A hundred grandparents showed up, forcing her to remove furniture to accommodate all of them.

Although grandparents are experienced at raising children, many realized that they had much to learn about autism. Gillman had professionals and representatives of autism organizations speak at GAN meetings, which were held monthly in different cities to reach as many grandparents as possible in Orange County. Today, the GAN website attracts visitors worldwide, Gillman says.

Grandparents had many of the same questions their adult children had when the grandchild was diagnosed. How do you communicate with a child with speech delays? What do you do when a grandchild is very sensitive to noises, crowds, or bright lights? How do you respond to a tantrum or keep a grandchild from wandering away?

Grandparents often help each other with advice and tips. “When you talk to other grandparents, they can tell you what worked in their family for holidays, what worked in their family for travel, and what worked for outings, to make sure your grandchild is safe,” Gillman explains. “They just have life experience to share with other grandparents.”

A Grandparent’s Advice

Gillman offered these tips on ways that grandparents can help:

• Be a good listener. Encourage and compliment your grandchild’s parents as much as possible.
• Discuss but do not question the therapies or diets that were chosen for your grandchild.
• Help give respite time to parents. If you are uncomfortable caring for your grandchild with autism, plan activities to do with your other grandchildren outside of their home.
• Bring in meals, offer to do carpools.
• Set aside a safe, quiet place in your home with some of your grandchild’s favorite things for their visits.
• If your grandchildren live far away, send them a calendar to mark the days until your visit together.
• Create a visual schedule using drawings or photos of what you will do together during the visit.

Grandparents as Autism Advocates

Anderson’s research shows the concerns of grandparents, along with their strength and resilience. For example, some grandparents have become autism advocates. They educate others about autism and send letters to the school district about services, according to the study.⁶

Grandparents also ask local and federal government officials for more funding and support for the autism community, Gillman says.

Some grandparents may not be as able to help, or be as supportive, as their adult children would wish. But many families praise grandparents’ role in the lives of their autistic grandchildren.

Juritza says that her parents and parents-in-law have been supportive of her son, Nick, who is 13. His grandfather is his best friend, she says. “We’re so fortunate that we have had our parents who are with us all the time.”

Resources

• See SPARK articles and recorded webinars about parenting and caregiver stress.
• View SPARK’s recorded webinar on “Grandparents of Children on the Autism Spectrum: Their Own Role, Their Own Challenges.”

References

1. Dyches T.T. et al. J. Autism Dev. Disord. 46, 812-824 (2016) PubMed
2. Hillman J. et al. J. Intergener. Relatsh. 14, 76-92 (2016) Abstract
3. Hayes S.A. and S.L. Watson J. Autism Dev. Disord. 43, 629-642 (2013) PubMed
4. Bonis S. Issues Ment. Health Nurs. 37, 153-163 (2016) PubMed
5. Rogge N. and J. Janssen J. Autism Dev. Disord. 49,2873-2900 (2019) PubMed
6. Hillman J.L. et al. J. Autism Dev. Disord. 47,2957-2968 (2017) PubMed