Power! How Extended Family Can Enhance the Lives of Kids
on the Autism Spectrum
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The word "family" can evoke powerful memories and emotions.
Thinking of family recalls the Robert Frost line, "Home is the
place where, when you have to go there, they have to take you
in." When grandparents are involved, the line could often be
changed to, "...they can't wait to take you in."
The relationships between kids and their grandparents can
provide some of the strongest extended family ties. When
families have children on the autism spectrum, these ties can be
a tremendous resource for both the kids and their parents. Of
course, that resource works best when parents and grandparents
I remember a shopping trip with my grandfather early in
elementary school. We lived in Maryland and my mom's folks had
taken the train from Missouri for a rare visit. It was magical
to be with these wonderfully attentive folks who I only really
knew from stories and pictures. My grandfather took me to the
store to buy some school supplies, including crayons. The list
in his hand called for a pack of twelve colors. But, being a
grandparent, he bought me the box of 64. When we got home, my
mom laughed and say said, "Oh, daddy, you didn't have to buy
that big box! The smaller box would have been fine."
It was a small substitution that didn't cause any problems and
also made me happy, so this "grandparent indulgence" was no
problem. For a child on the spectrum, however, having
grandparents who act in accordance with a parent's directions
and approach -- sometimes even on small things -- can be
extremely important. Consistency is often an obsession for kids
on the spectrum and they can have rigid likes and dislikes. If
you don't know your grandchild really well, you could be stunned
when buying the "wrong" flavor of ice cream sends a smiling
child into a sudden emotional meltdown.
Tried and true parenting techniques that work fine with your
other grandkids may just not work with autistic children. Also,
each child with autism is an individual, so parents often have
to go to great lengths to determine what works best for their
child. The brains of kids with autism are wired a bit
differently, so even if they're on the higher-functioning end of
the spectrum, with a condition such as Asperger Syndrome, some
things that are easy for other kids can be tough for them. For
example, many have a difficult time learning and applying social
skills. Parents often have to pick out the most important
behaviors to work on and let the less important ones slide.
As grandparents, you don't want to be too quick to make
judgments about parents' actions when you may only see part of a
very complicated situation. Did you ever get frustrated with
your parents because they criticized your actions based on only
part of the picture?
If you're a grandparent of a child on the spectrum and you're
close to the family and providing lots of support, bless your
heart! You're probably already tuned in to what we're talking
about here. If you're a grandparent who's been separated by
distance or other factors and you'd like to be closer, here are
some steps you can take to build bonds with your grandkids.
Talk with your son or daughter and his or her spouse about your
grandchild. Find out as much as you can about the child's
condition and what they're doing to help and support him or her.
Ask how you can help and how they want you to deal with any
challenging behaviors. Kids with autism often face a lot of
rejection, so some of the most important things you can offer
are love, patience, and unconditional acceptance. This comes
more naturally to some grandparents than to others, but it can
mean a lot to a child who others may see simply in terms of his
or her problems.
People often focus on the problems of autism, but there's
another side to the story. You may find that spending time with
an autistic grandchild lets you be with a fun person who just
looks at the world a bit differently. Sometimes letting go of
what a child might have been helps you truly appreciate who he
is. My son, who has Asperger Syndrome, has a great relationship
with his grandparents, who live nine hours away, but visit
frequently. He's also lucky to have relatives who live close by,
including a great-uncle who always enjoys swapping jokes
whenever they're together.
It's important to recognize that kids on the spectrum often have
significant strengths as well as challenges. You may be the
person who can help draw out those strengths and help your
grandchild prepare to deal as independently as possible with the
outside world. What a feeling it is to make a real, positive
difference in a child's life.
Spending time with your grandkids can help build a relationship
that gives parents the confidence to leave a child who needs
special attention in your care. It can be hard to find
spectrum-savvy baby sitters, so perhaps you can enable
stressed-out parents to go out for some much-needed, worry-free
Sometimes, parents just need someone to listen. Lending your ear
may help them put things in perspective. If you have advice to
offer (you do, don't you?), it's more likely to be taken if you
use the recipe of ten parts listening to one part advice. Also,
make sure you know what you're talking about and focus on the
benefits of what you're suggesting. Be aware that it's common
for parents of kids on the spectrum to be wary of unsolicited
advice, particularly if they've heard people routinely suggest
therapies that don't apply, or make simplistic observations
like, "He just needs more discipline." Even if you have good
advice to give, you may have to overcome "advice burnout."
The best way to have your counsel taken is to really listen to
the parents, really do your research and, hopefully, spend
enough time with the child that you show his or her parents you
really understand the situation. Always focus on the benefits of
what you're suggesting. If you still sense resistance, you might
try approaching the subject by asking questions. "I read about
treatment 'XYZ' where children responded well. Is that something
that you think might help Jimmy?"
I've seen some situations where one or both parents were in
denial about a child's condition, and the grandparents
diplomatically encouraged the parents to have the child tested
or to seek support. This encouragement can be a tremendous
benefit to the parents and grandchild.
With some parents, however, it's a challenge to help them see
through their denial. If you push too hard, you risk having them
throw up a wall that keeps you from helping your grandkids. Just
remember that sometimes parents are mourning the loss of the
child they expected your grandson or granddaughter to be. Again,
patience and a lot of listening is a good strategy to put you in
a position to influence the situation in a positive way.
I also know of situations where grandparents are actually
raising their grandkids. It's a special kind of caring when
"extended family" becomes just "family" because that's what
Even though grandparents have the full range of strengths and
flaws that we all have, that special connection with grandkids
often seems to bring out the best in people. Ideally,
grandparents have just enough distance to see things
realistically, are close enough to really care, and have the
experience to be effective.
But caring counts most. When I think of my own grandparents, I
realize that my best memories are not about the size of the
crayon box granddad bought me. They're about special people
caring a whole lot about making my life colorful and fun. They
made me look forward to every minute I was with them.
What better gift could you give?
ABOUT THE AUTHOR -- Dan Coulter is the writer/producer of
numerous videos on Asperger Syndrome and Autism, including:
"ASPERGER SYNDROME DAD -- Becoming An Even Better Father To Your
Child With Asperger Syndrome." You can find more articles on his
Copyright 2006 Dan Coulter All Rights Reserved Used By
(A shorter version of this article first appeared in the Fall
2006 edition of Autism Spectrum Quarterly magazine.)
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