Autism Changes the Role of Grandparents

A groundbreaking survey from the Interactive Autism Network (IAN) paints a picture of grandparents assuming a larger role in the lives of their grandchildren with autism. They are often the first to suspect that a child may have autism and once diagnosed, they have their own struggles in coming to terms with it. Some are resilient, while others confess to having a hard time moving through their grief.

Thereafter, grandparents become immersed in the daily life of the child, even going so far as to have some say in their course of treatment.

Overwhelmingly, grandparents are a savvy group, doing extensive research to empower themselves as an advocate for the grandchild and taking up autism causes.

Among the survey’s findings:

  • Over 36 percent say they take care of their grandchild at least once a week and about 1 in 5 indicate that they provide regular transportation for the child. 
  • 72 percent of grandparents say they play some role in making treatment decisions for their grandchild.
  • Many say they moved so they could be closer to their grandchild, while 1 in 10 report living in the same household.
  • A quarter of grandparents report spending up to $99 a month on their grandchild, with some contributing over $500 or $1,000 monthly. 

Grandparents are making considerable sacrifices for their child with autism both in terms of money and freedom as they retain the role of caregiving long after they thought it would be over.

While unscientific in that uninvolved grandparents would be unlikely to participate in the survey, the findings do reveal a trend towards a more tightly-knit extended family, a village forming to help raise the child with autism. This is very touching and heartening to me that at a time when modern life is seeing families more scattered and estranged, autism is bringing them together.

Even more, over ninety-percent of the survey respondents reported that they feel much closer to their grown child because of their grandchild’s autism diagnosis. As in many other areas, this appears to be yet another silver lining for families facing autism on a day-to-day basis.

Much like within neurotypical families, grandparents are often the unsung heroes and deserve much more credit and recognition for their part in dealing with autism.

18 Responses to Autism Changes the Role of Grandparents

  1. I know that my parents – especially my mother – play a major role in my son’s life. Four out of five days a week my mother commutes by public transportation (60 minutes each way) to pick up my son from the school bus and to be present during his therapy. On days when there isn’t therapy, she works on fine motor skills and puzzles. I am always so amazed at how wonderfully my mother works with my son – she is not the woman that raised me LOL. Earlier this month, I wrote a blog post about my mother called “My Mother as Abuela (Grandmother)” –

  2. Susan says:

    I think sometimes grandchildren represent a second chance for mothers. Being once removed helps.

    Your mother sounds awesome. I’ll definitely use your link…Susan Moffitt

  3. Teresa Steppe says:

    As a grandmother with a beautiful now 5 year old grandson with autism I have made it a point to learn all I can about Autism Spectrum Disorders and what I can do to help him in his socialization skills, academincs, and sensory issues. I do believe that it does take a village to raise any child in these tough times but it exspecially pertains to a child on the autism spectrum. I know that my role has changed. I also know that is true that grandparents are usually the first to realize that something is wrong. I noticed it in my grandson, and am now noticing in two of my other grandsons. I love them all they are my heart. I will help them in any and every way I can. My self and my family raised money for the Autism Speaks event in Atlanta on May 22, 2011 for the first time. We need funding for research and we need insurance reform here in Georgia to cover the therapies and treaments for your children. Please be an active grandparent. Even though we are up in age there are still lots of things we can do to help our grand children and help raise funding for research.

  4. Susan says:

    Bless your heart Teresa!

    - SM

  5. Abbie Eich says:

    If you have a supportive grandparent then shout it from the rooftops your appreciation. As a parent of two Aspergian boys who are treated as if they have a communicable plague buy their grandmother and aunts I am envious of those who have it differently. My kids are going to get to the age when they are going to wonder why Nana treats them different and why their aunt takes their other cousins placed but not them. My heart breaks in knowing that at some point they are going to question their worth

  6. Jackie says:

    We live 4 hours from our 4 year old grandson. I wish we were closer so we could help our son and daughter-in-law more and be more involved with this precious little boy. We are all very lucky that daughter-in-laws family do live in same town and the whole family including other grandparents, aunts, uncles and cousins are all there to help and love him. At one of his therapy sessions there were 12 family menbers. it was beautiful to see how this family was there to learn what we all needed to do to make sure this little boy leads a happy life.

  7. Susan says:

    Abbie, my story’s closer to yours and I know how hard it is. My twins are Aspies and they never took the family dynamic to heart or let it impact their sense of personal worth.

    Jackie, it’s mind blowing to think of 12 family members gathered together on behalf of one very lucky boy.

    Thank you both for writing…SM

  8. Hannah says:

    My parents live many miles away – and don’t want to move (I’m not their only child!). My parents-in-law don’t want to accept the autism of my child so we stopped the contact some time ago to protect her. My husband is also an Aspie. I really wish for my kids to have as good grandparents as I had in my childhood. But in fact they have only “people who send them gifts to birthdays and x-mas”, not really more. And I have no chance to change it. :-(

  9. Susan says:

    That’s a very hard reality and I really empathize with you. It’s leaves such a void.

    Since your husband is an Aspie it’s a double rejection for him. People’s ignorance and closed hearts sadden me.

    Sometimes people come into your family’s life that can help play the role of those missing people, and that’s about as good as it gets.

    Good luck in creating your own extended family…Susan Moffitt

  10. Leann Hartnett says:

    My husband and I work very closely with each other to promote every benefit we can for our 9 yr old son with autism. Though our parents are accepting, they are also clueless and shy away from anything involving him if one of the two of us aren’t present. While my mom takes my daughter out of state for a couple weeks every summer, she wouldn’t dare go to the walmart 5 minutes away with my son. I dont want my daughter to lose out, however my son IS losing out. When we can, we do go along on these adventures so that my son can also be included. I’m also part of a wonderful group called Feat of CNY. They have made a community within a community where my entire family is welcome to participate. They encourage it. Surrounded by other families who also face our challanges, we have the time to breate a sigh of relief knowing that if my son, or any other child, darts off there is an entire community willing to chase and or find. For that, I am truly blessed.

  11. Susan says:

    Wow. Feat sounds great! Your parents are afraid of the responsibility for your son, but I’m glad they are in his life. Not optimal, but a pretty good scenario.


  12. Tom Mittower says:

    I’m one of those involved grandparents. We have a wonderful little (not so little any more – she’s 7) granddaughter that happens to be autistic. Working on putting together an equine therapy center for her and children like her in our area. When she’s on the back of that horse her expressions are priceless. Follow along on facebook at Mittower Stables or

  13. Susan says:

    What a great and commendable venture. thanks for the link…


  14. Jackie says:

    Our 4 year old grandson is beginning horseback riding on his sister’s horse. He loves it.

    I am so sorry for those of you who have parents who do not want to be involved with your precious children.

  15. Susan says:

    I hear a lot of great things about horses and children with autism…

    It’s very sad and hard when grandparents aren’t involved. They have no idea what they’re missing.


  16. Popsie says:

    Then there’s the grandparents who go away when they see trouble and ignore autistic child and siblings that were once so dear to them, they fill their lives with holidays and material goods and other peoples grand kids and simply ignore their child who is a responsible man looking after a family with two asd kids. As soon as our child’s autism was apparent they caused a row and left, that was five years ago now and no birthday or Christmas cards for all those years. MIL walks past me in shops and even did it when older child was with me, he was in shock and tears. I would break down walls to be near my grandkids

  17. Susan says:

    Wow. I’m sorry for your pain and the pain of your rejected children.

  18. Susan says:

    Yeah, I fall in the envious camp as well.

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Did You Know?

  • * In 1970, Autism affected 1 out of 10,000 children
  • * Autism now affects 1 out of 88 children
  • * Autism affects 1 in 54 boys
  • * 1.7 million Americans have some form of autism
  • * 4 out of 5 autistic children are boys

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