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From financial support to care giving, grandparents play a significant role in the lives of grandchildren diagnosed with autism spectrum disorders, according to a preliminary survey recently released by the Interactive Autism Network.

Deb Melching, a 53-year-old Mansfield, Ohio, resident, agrees – her grandson Daylin was diagnosed with autism when he was 3 years old.

“Autism is my life, now,” Melching said. She is one of the more than 2,600 grandparents who participated in IAN’s online survey.

Sometimes a grandparent’s role is paramount. Nearly one-third of grandparents surveyed said they were the first person to notice something “amiss” about their grandchild and raise concerns about the child’s health.

“I knew something was wrong the day he was born,” Melching said of her grandson. “He was just not a typical baby – I’ve never seen a baby like him.”

This particular statistic surprised researchers, partially because grandparents of children with autism had previously gone unstudied.

“The first thing I did was try to go out and see what [research] had been done,” said Connie Anderson, community scientific liaison for IAN.

The answer? Not much, according to Anderson.

“There was very little about grandparents, and what there was might be about developmental disabilities in general, and grandparents as primary caregivers,” Anderson said. “But not just regular old grandparents, and not specifically autism.”

Researchers at IAN decided to analyze grandparent involvement after they were approached by numerous grandparents – both at autism walks and via e-mails and phone calls -- who said, “you’re missing something here.”

“It really was a direct response to the community pointing out to us the importance of the grandparents’ perspective, and how impacted they were by their grandchild with autism,” said Dr. Paul Law, director of the IAN Project at the Kennedy Krieger Institute in Baltimore.

Grandparents or additional parents?

When a grandchild is diagnosed with autism, the grandparents sometimes take on a care-giving role. This could range from providing emotional support to babysitting or financial contributions, according to survey results.

Melching’s daughter is a single mom. Melching takes her grandchildren – Daylin and his older brother, Donovan -- every weekend. In the summer, she watches them four days a week, while their mother is at work. She joins the more than 31 percent of survey respondents who said they provide some sort of direct child care to their grandchild with ASD at least once a week.

But Melching said she doesn’t mind – she loves watching her grandkids.

“I just feel lost when they’re not there,” Melching said. “A lot of parents cannot find babysitters, and they have to look upon the grandparents to watch their child because a lot of them have behavior issues. The grandparents have to be there for these kids.”

A grandparent’s financial contribution can be significant, the IAN study found. Some reported going so far as raiding their retirement fund to help pay for therapy and care.

After her grandson was diagnosed with autism, Melching leapt into action to help provide funds for Daylin’s treatment.

“It’s really expensive, so I decided that I was going to have a benefit garage sale for him,” Melching said. “I raised $3,600 to help with his therapies.”

And in doing the garage sale, Melching discovered something else: Resources for parents of children with ASD were scarce.

“So I started a non-profit association,” she said. Her Autism Awareness Walk-a-thon is now in its fourth year. She also leads various support groups in her hometown.

Double whammy

Concern for their grandchild is an issue, but so is grandparents’ concern for their own child.

“I call it the double whammy,” Anderson said. “It’s a two-layer issue. They’re worried about their adult child and their grandchild.”

Another issue IAN hopes to address is early detection. Although 30 percent of those surveyed were the first to notice problems, Law said grandparents don’t always feel comfortable telling the child’s parents.

One phrase Anderson said she heard from grandparents? “We prayed that someone else would say something.”

Law pointed out the need for resources for grandparents in these difficult situations.

“It can create strife in the family,” Law said. “Parents may not be ready to accept there might be a problem with their precious child. There needs to be some support for the grandparents.”

Beyond the stigma

The IAN survey results are preliminary. The study has not been peer-reviewed, and IAN said it cannot generalize to the entire population of grandparents of children with ASD because the survey was voluntary.

What’s perhaps most important, Anderson said, is that people look at the bigger picture of autism spectrum disorders. It can be hard to provide care for children with autism and have a relationship with them, but it can also be a very wonderful experience, she said.

“I think a lot of times there’s a stereotype of the spectrum that’s wrong,” said Anderson, who has a son with Asperger’s, part of the autism spectrum. “Actually, [children with autism] just do it differently. They have ‘glitchy social software.’ Maybe they don’t relate in the same way, but it can also mean they don’t do some of the icky things normal people do.”