Autism Grandparents: How to Be Supportive

Today’s video blog is all about autism grandparents and some of the challenges and the unique role of being a grandparent of a child with autism. It’s not just the parents that raise a child. Often, the grandparents do too. So that’s why I want to talk about how autism grandparents can help their grandchildren with autism.

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Grandparents’ Guide to Autism

Today we are talking about autism grandparents. I recently interviewed a grandma, I call her “Gung-ho” Grandma Diane, whose grandson Jude was diagnosed with autism in June of 2019. Prior to that, in February of 2019, she had a friend recommend my toddler online course and community. So Diane quickly fell into my world way before the diagnosis and some of the changes that she’s seen in Jude are amazing.  He had zero words and now he’s talking in sentences, using contractions, using no, just a bunch of great progress. He’s imitating, he’s matching, and he’s following directions. Diane shared all of this with us on the podcast. So if you want to listen to that full podcast with Grandma Diane, you can go to marybarbera.com/37.

But for this video blog I wanted to share some of the statistics that I found about autism grandparents from a great free guide that I downloaded from Autism Speaks called the Grandparents’ Guide to Autism. Make sure you go on their website to download your free copy.

Autism Speaks Statistics

  • About 30% of the time, grandparents were the first to notice that there was a problem in their grandchild’s development. I know that my mother-in-law mentioned to my husband pretty early on, before Lucas’ diagnosis, that she thought his development was off track. I was just in a big state of denial.
  • 90% of grandparents felt that the experience of facing their grandchild’s situation together had brought them and their adult child closer. I know with my parents, they’re both in their eighties now, and they have both been tremendously supportive for Lucas and for my family. They’ve been a big part of my life and I would say that our involvement with autism has probably brought us closer as well.
  • 72% of grandparents said they have some role in making treatment decisions for their grandchild.
  • More than 7% said they’d actually combined households to help.
  • 34% said they take care of their grandchild at least once a week.
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Suggestions for Autism Grandparents

As part of this autism grandparents guide, there are some suggestions if you’re not living near your grandchild with autism. So you definitely want to check out that guide if you are a grandparent and you want to learn some more information. I’m just giving you some highlights from this autism grandparents guide. Some ways that you can support your child and your grandchild are:

  • Ask if you can babysit your grandchild for a few hours or overnight. Give your adult child a break and have fun spending time with your grandchildren.
  • If you live at a distance, offer to pay for some respite or pay for a babysitter.
  • Educate yourself and your extended family about autism. Diane found my online course to educate herself. We have several grandparents right within our courses. They’re a big part of our community. In many situations like Diane’s, she’s retired, she was and still is an avid reader and she was able to really get ahead of what she needed to do to help her grandson. Education is just so key.
  • You want to, if possible, be active in your grandchild’s treatment and development. You are in a unique position to help fight the social stigmas by disclosing that you have a family member with autism. Also, you might be in a position where you’re on boards of hospitals or you can do public advocacy and meet with legislators to try to get autism awareness, acceptance, treatment, funding, or research to the next level.

Reactions to an Autism Diagnosis

This guide also says that grandparents have common reactions to grief when their grandchild is diagnosed. They can be in denial and thinking things like this cannot be happening to my family. Some might fear what will happen to their grandchild when they can no longer help. Or they might be angry, blaming something or someone. However, there’s no actual way to tell where autism comes from. Some of the stages of grief are guilt like did I do something to cause this? Being overwhelmed by all the information is just so common for both parents and grandparents. Some might feel powerlessness and disappointment. They might worry about whether they can have a somewhat normal relationship with their grandchild.

As Lucas got older, he had some severe problem behaviors like aggression. And my parents were worried that they would get injured. We want to acknowledge the role of grandparents, the grief response of grandparents, and what they can do to support the family and the grandchildren. So again, I would recommend going to Autism Speaks and downloading The Grandparents’ Guide to Autism.

So if you liked this video/article and you know other grandparents who might benefit, I hope you will share this it, give me a thumbs up, or leave me a comment. And if you would like more information about potentially joining my online courses and community, go to marybarbera.com/workshop. And I hope to see you right here next week.

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