A Grandparent’s Guide to Autism

An Autism Speaks Family Support Tool Kit

 A GRANDPARENT’S GUIDE TO AUTISM

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 A GRANDPARENT’S GUIDE TO AUTISM

About Autism
Autism, or autism spectrum disorder, refers to a range
of conditions characterized by challenges with social
skills, repetitive behaviors, speech and nonverbal
communication, as well as by unique strengths and
differences. We now know that there is not one autism
but many types, caused by different combinations of

Introduction genetic and environmental influences. The term

“spectrum” reflects the wide variation in challenges
and strengths possessed by each person with autism.
If your grandchild has been diagnosed with autism, you
have come to the right place for support. The diagnosis
may have come as a surprise to you or been some- Some facts about autism
thing you have suspected for some time. No matter • The Centers for Disease Control and Prevention
what, the words “your child has autism” have changed (CDC) estimates autism’s prevalence as 1 in 59
your family’s life as you knew it. You are likely worried children in the United States. This includes
about your grandchild’s future and about the wellbeing 1 in 37 boys and 1 in 151 girls.
of your child as his or her parent, in addition to other
• An estimated 50,000 teens with autism become
grandchildren you may have. Many questions are likely
adults – and lose school-based autism services –
running through your head during this sometimes
each year.
difficult time. This guide will help provide you with a
better understanding of autism, and arm you with tips, • Around one third of people with autism remain
tools and real life stories to guide you as you support nonverbal.
your family immediately after the diagnosis and • Around one third of people with autism have an
beyond. It will help you form a positive relationship intellectual disability.
with your grandchild and provide the encouragement • Certain medical and mental health issues
your child needs to raise a child with autism. frequently accompany autism. They include
If you are looking for additional information, the gastrointestinal (GI) disorders, seizures, sleep
Autism Speaks Autism Response Team is here to disturbances, attention deficit and hyperactivity
help connect you with resources to meet your unique disorder (ADHD), anxiety and phobias.
needs. They can be reached at Note: In 2013, the American Psychiatric Association
888-288-4762 merged four previously distinct diagnoses into one
(en Español 888-772-9050) or umbrella diagnosis of autism spectrum disorder(ASD).
[email protected]. These included autistic disorder, childhood disintegrative
disorder, pervasive developmental disorder-not otherwise
You can also find many more tool kits and resources specified (PDD-NOS) and Asperger syndrome.
at AutismSpeaks.org.

*For the purposes of this tool kit, the term “autism” will be used to describe children with all types of autism spectrum disorders, including Autistic Disorder, Asperger Disorder,
and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS).

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What Does Autism Look

Like?
Autism affects the way an individual perceives the
world and makes communication and social interaction
difficult. Autism spectrum disorders are characterized - “IF YOU’VE MET ONE PERSON
by social-interaction difficulties, communication WITH AUTISM - YOU’VE MET
challenges and a tendency to engage in repetitive
behaviors. However, symptoms and their severity vary
ONE PERSON WITH AUTISM.”
widely across these three core areas. Taken together, Stephen Shore, Ed.D.
they may result in relatively mild challenges for some-
one less impacted by autism. For others, symptoms
may be more severe, as when repetitive behaviors and
lack of spoken language interfere with everyday life.

POSSIBLE SIGNS OF AUTISM

in babies and toddlers: at any age:

By 6 months, no social smiles or other warm, Avoids eye contact and prefers to be alone
joyful expressions directed at people
Struggles with understanding other people’s
By 6 months, limited or no eye contact feelings

By 9 months, no sharing of vocal sounds, smiles Remains nonverbal or has delayed language
or other nonverbal communication development

By 12 months, no babbling Repeats words or phrases over and over

(echolalia)
By 12 months, no use of gestures to communicate
(e.g. pointing, reaching, waving etc.) Gets upset by minor changes in routine
or surroundings
By 12 months, no response to name when called
Has highly restricted interests
By 16 months, no words
Performs repetitive behaviors such as flapping,
By 24 months, no meaningful, two-word phrases rocking or spinning
Any loss of any previously acquired speech, Has unusual and often intense reactions to
babbling or social skills sounds, smells, tastes, textures, lights
and/or colors

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Reaction to the
Diagnosis
Most grandparents are shocked when they hear their
grandchild has been diagnosed with autism. You may
experience a full range of emotions including sadness,
blame, embarrassment and anger. You may find your-
self going through a period of mourning very similar to
that of parents.
Each person responds to the news of an autism diag-
nosis in a very personal manner. You may be con-
cerned for your son or daughter and his or her spouse,
worried about how they are coping and unsure of
how best to help. You probably have many questions
and it may take some time to find the answers. This
guide will help give you a starting place to adapt to the
diagnosis and thrive as the grandparent of child with
autism.

What Causes Autism? Common reactions include:

One of the most common questions asked after a Denial: “This cannot be happening to my family.”
diagnosis of autism, is what caused the disorder. We
Fear: “What will happen to my grandchild when
know that there’s no one cause of autism. Research
I can no longer help?”
suggests that autism develops from a combination
of genetic and nongenetic, or environmental, Anger: “This comes from my daughter’s
influences. These influences appear to increase the spouse’s side of the family.”
risk that a child will develop autism. However, it’s
important to keep in mind that increased risk is not the Guilt : “Did I do something to cause this?
same as cause. For example, some gene changes Should I have helped my daughter more during
associated with autism can also be found in people her pregnancy?”
who don’t have the disorder. Similarly, not everyone
Confusion: “I am overwhelmed by all of this
exposed to an environmental risk factor for autism will
new information.”
develop the disorder. In fact, most will not.
Most genetic and nongenetic influences that give Powerlessness: “I wish I could change what is
rise to autism appear to affect crucial aspects of early happening to my family.”
brain development. Some appear to affect how brain
Disappointment: “Will I be able to have a
nerve cells, or neurons, communicate with each other.
relationship with my grandchild?”
Others appear to affect how entire regions of the brain
communicate with each other. Research continues
to explore these differences with an eye to developing
treatments and supports that can improve quality
of life.

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Your Role as a
A quarter of grandparents reported spending
up to $99 a month on their grandchild’s autism-
related needs, with some contributing more

Grandparent than $500 or $1,000 monthly.

If your grandchild has recently been diagnosed with

autism, you are probably feeling overwhelmed. It may
take some time to figure out your role as a grandparent
to a child with autism. It is likely that you still have the
Support for Your
same priorities you had before the diagnosis.
In 2009, the Interactive Autism Network (IAN)
Grandchild with
conducted a survey of 2,600 grandparents of children
with autism to learn how having a grandchild with
autism changed their lives and how they supported the
Autism
emotional and economic needs of their adult children After your grandchild is diagnosed with autism, you
and grandchildren. Highlights of what was learned may feel unsure of how to help. It is likely that the
from grandparents in this survey include: supports your grandchild with autism needs may differ
from those of your other grandchildren. Your relation-
About 30% of grandparents were the first to ship may be different, but it will be equally as special
notice that there was a problem with their and rewarding. Many grandparents experience similar
grandchild’s development. reactions find that it can be difficult to build a relation-
Nearly 90% felt that the experience of facing ship and connection with a child with autism, as the
their grandchild’s situation together had very nature of the disorder complicates their social
brought them and their adult child closer. interactions. In addition, a child’s behavior may be
off-putting. Some socially unacceptable behaviors can
72% of grandparents said they play some be an embarrassment in public. Be patient, and ask
role in making treatment decisions for their the parents for help. Start out spending short periods
grandchild. of time participating in a structured activity that your
grandchild enjoys. Get some success under your belt
More than 7% said they had actually combined and go from there. Your good intentions will be reward-
households with their grandchild’s family so ed over time.
they could help them manage all that’s involved
in raising a child with autism, while 14% had Be a part of your grandchild’s life. If possible, carve out
moved closer (but not into the same home) special time for your grandchild on a regular schedule.
for the same reason. Children with autism do well with predictable and con-
sistent schedules. Try to find activities that you can do
Over 34% said they take care of their grand- together that are structured and do them regularly. Ask
child at least once a week and about one in the parents about your grandchild’s favorite activities,
five grandparents indicated that they provide ones that he or she enjoys and doesn’t get frustrated
regular transportation for the child. with.

About 6% of grandparents said that a family Many grandparents recommend connecting with other
situation had become so untenable they had grandparents who have children with autism in their
taken on the role of parent. lives. Ask your children if they know of other families

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with local grandparents. Join local chapters of autism • Remember that grandparents are in a unique
organizations or participate in your local Autism Speaks position to help fight social stigmas associated
Walk. You can also contact hospitals, pediatricians and with autism. Disclosing that you have a family
other autism service providers to determine if they are member with autism can encourage others to
aware of other grandparents who may be interested in ask questions so they become better informed
speaking with you or starting a support group. Search and aware of the disorder.
the Autism Speaks Resource Guide online for
• If you are interested in public advocacy, meet
resources in your area.
with, talk to and write to legislators, government
officials, public school teachers and administrators,
insurance company managers and other

Support for Your

professionals involved in education, housing,
and public transportation. Everyone listens to a
grandparent, so take advantage of this!

Child Some ways you can emotionally support your

adult children:
A major concern for grandparents is the wellbeing of • Keep the door open to genuine communication
their adult children who are parenting a child with by sharing your own sadness, fears, and joy.
autism. Because a child’s autism diagnosis can lead to Be open and honest about how you feel about
emotional, financial and marital stress, grandparents interacting with your grandchild. Relating to a
frequently play a significant role in helping their families. child with autism can be draining and stressful.
It’s okay to admit that at times you feel frustrated
Here are some ideas on how you can help:
or frazzled.
• Ask if you can babysit your grandchild for a few
• Be open to hearing about their emotions and be
hours, or overnight, so that your child can get
honest in sharing your concerns. Try to avoid
a break or enjoy some alone time with his or
judgments unless you feel strongly that your
her spouse.
grandchild might be endangered by some choice
• If you live at a distance or are not comfortable his parents have made. Being patient at a time
babysitting your grandchild, you may want to like this is very difficult, but you will get better
offer to pay for respite services if possible. results in the long run if you don’t force your
• Educate yourself and your extended family point of view on them.
about autism. Attend seminars, read books, • Respect the decisions they make for their child
call or email your family to get frequent updates with autism. They will appreciate your support.
on your grandchild’s progress. Ask for clarification or more information if you
• Become active in your grandchild’s treatment have specific questions.
and development. If you live nearby, offer to • Share a sense of hope with your family. There is
accompany your grandchild to his or her therapy promising research underway, with many
appointments to observe these sessions and possibilities or the future.
learn effective techniques for interacting with
• Notes of encouragement or just simply listening
your grandchild.
can be really helpful to your child.

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Taking Care of Here are some ideas on how you can help:
• Take time for yourself and enjoy your personal

Yourself life. Stay strong and healthy. Get the physical

exercise you need for good health.
• Join a grandparent support group. Talking with
As a grandparent, you can and often do play an
others who are going through the same things
important role in the lives of your grandchild with
can help you to feel you are not alone.
autism and his or her family, but it is also important to
take care of yourself so you can help care for your • Don’t hesitate to seek professional help. You
family. Balancing the time and energy spent with your may benefit from talking with a social worker,
grandchild and your personal needs is not easy. It counselor, or clergy member who is objective
takes time to achieve a balance. As with any major life and there to support you.
event, there is no right way to react. However, there • Do something to renew your energy and give
are many things you can do to look after yourself and yourself a break! Reclaim past hobbies or
achieve a healthy balance: explore new ones.

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Five Tips for

Grandparents of a Child
with Autism
This is a post by Jane Springer, a Certified Life & Style
Coach focusing on empowering people to move beyond
life’s challenges to live life on their own terms. Using her
own experiences, she guides people to improved health,
increased happiness, and enhanced self-confidence.
She relishes her roles as wife, mom, step-mom and
grandmother. Learn more at www.JaneSpringer.com.

1. Expect the unexpected – be prepared.

With a child with autism, you never know when
something will throw them into a major meltdown. It
can happen when you least expect it. Case in point.
My grandson is in vacation bible school this week. At
the end of the program, there were 300+ kids in the
big church with a loud speaker leading the group in
song. He had his hands up to his ears, which There have been many times in the six years since
generally means there is too much noise or he is in my grandson was born that I have wanted to offer
unfamiliar territory. The leader said a prayer and my opinion on everything from the food he is being
then said Amen (Ahmen) He went into complete offered, to the vitamins he is taking or not taking, to
meltdown mode because he thought it should be his bedtime habits to potty training. Most of the time
pronounced Amen (long A). Tears and yelling. This I have kept my mouth shut, because ultimately,
is typical of children on the autism spectrum. So we unless he is with my husband and me, I have no
roll with the flow as best we can soothe him with the control over any of these things. Worrying about it all
words and actions that work the best in the situation doesn’t do me any good, nor would it improve my
and generally get him out of that space. Humor and relationship with my daughter, his mother. Yes, there
making it a game occasionally works. It’s best to are times when I gently offer my opinion or ask
have your “go to” bag of remedies ready in case an questions, and yes, my daughter gets impatient with
unexpected “crisis” develops. me occasionally. But if I want a good relationship
with his parents and want to keep spending time
2. Change what you can and let the rest with my grand kids, I am very careful about offering
go (a.k.a using the Serenity Prayer). my opinion. I concentrate on what I can do when he
“God, grant me the serenity to accept the things I is with me. My ultimate desire is to have a close and
cannot change, The courage to change the things loving relationship with the parents and my grand-
I can, And the wisdom to know the difference.” children. So sometimes, you just have to let it go...

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3. Savor the moments and make In my experience, it is easier to work with the
memories. fixations, rather than forcibly try to ignore those
My grandson is not particularly affectionate. From quirks. I have even made an outing of it for him and
the time he was a baby, we waited for kisses and a treasure hunt by going to mall and seeing how
hugs. There were moments when I could get him many elevators there were there. We had cookie
to come into my arms, but I had made it into a time at the end of the treasure hunt. A fun day
game. But as time has gone on, he has gotten with Nana.
better about doing a half-hug and sometimes a
kiss, but I usually have to ask. At some very
5. Be reliable and available, when possible.
special moments, he will get up into my lap or in It is important to be reliable and dependable for your
my husband’s lap (he seems to gravitate towards own children and your grandchildren. Grandparents
him for sitting together) and do a good snuggle. can play a key role in their grandchildren’s lives and
What I have learned is to stop, breathe and just relieve the stressed-out parents. Nothing brings
take in the moment when he is snuggled, thank home the reality of what it’s like to live with a child
God for the moment, and consider it a memory I with autism than to spend time with them and it will
can cherish. His unstoppable giggling fits make give you a new appreciation for what the parents go
me giggle, too. An offhand quirky remark I am not through. Be there with your wisdom, guidance and
expecting can be another memory. Jumping the presence, if at all possible. This does not mean,
waves with him in the ocean or his first kicks in the however, that you are at their beck and call. It is
pool without his “swimmies”. These are memories OK to have boundaries. Do not feel like you have
one can tuck away to be savored later, especially to give up your own life to help them out. A grand-
when he is having a bad day or is in melt-down parent who has his own interests and life is a
mode. You can call upon these memories and happier grandparent. Your children will respect you
remember the sweet little rascal he can be. for it and grandchildren will ultimately know that
you offer them love, dependability and a soft,
4. Learn to love the quirks, work with sweet place to fall.
them and use them.
My grandson loves elevators. He likes to know
how they work, he likes the feeling of riding in
them (especially the glass ones), and he loves
to push the buttons. We have used this as an
incentive when he balks at something that he
needs to do or something we are trying to teach
him (like potty training). I have even used it in a
meltdown situation to change things up. It
generally works like a charm. We have also
used it as a method of teaching him his numbers.

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Long-distance Grandparenting:
8 Ways to Stay in Touch with Your
Grandchild with Autism
This is a post by Debora L. Smith, founder and executive director of Autism Resource Mom,
a nonprofit organization in Southern California that provides support, guidance and hope to
individuals on the autism spectrum and their families. She is the mother of a young adult with
autism, and as such, is passionate about providing social opportunities for these individuals
and informational workshops for their families.

We parents know the vital role grandparents play in the lives of our kids with autism spectrum
disorders [ASDs]. They provide patience and understanding, unconditional love and in many
cases they help with child care, finances and health care. Studies have even found that as many
as one in three grandparents may have noticed autistic-like behaviors in their grandchildren prior
to diagnosis. This additional support is invaluable to us.

But not all grandparents live close by. My folks are snowbirds from Michigan – fortunately for
my son, they come out to California and live for three months in the winter. My son loves every
minute of it.

Over the years, my parents have learned that their grandson requires a few extras from grand-
ma and grandpa – like a mega-dose of perseverance and an uber-willingness to plan ahead to
prepare him for what’s coming next. And as they’ve learned about him and his way of being, it
has been a special joy of mine to watch my mom and dad as they teach others about autism.

It should come as no surprise that researchers classify diverse forms of grandparenting that
include everything from the mentor, nurturer and role model to the hero, playmate and wizard.
And these classifications hold whether you live across town or across the country.

Those of you who are “long-distance” grandparents may think you play a lesser role, but that
doesn’t have to be the case.

Here are eight fun ways to stay in touch with your grand kids – you may be surprised to
find that you’ll be indirectly helping your children, as well.

SOCIAL SECURITY
If you feel secure enough to venture into social media, communicate using the Internet. Truly,
it’s not that difficult, as more than half of adults over 65 are online these days. From texting and
email to Facebook [FB] and instant messaging, the opportunities are endless. My dad constantly
comments on my teenager’s FB posts and his encouragement has such a positive impact. You
can also agree on a time to call your grandchild’s cell phone-or simply call on the home phone-
but schedule it. Make a big deal about it. Have “news” and questions ready for an older child; for
a young one, keep it simple. And be prepared to listen.

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YOU’VE GOT MAIL

Who doesn’t love to get mail? Never underestimate the power of a good old-fashioned letter. It doesn’t even
have to be long – just a few sentences. I’ve kept some notes my parents sent to my son when he was younger,
with pictures or comics they thought he’d enjoy. We treasure these! Postcards are fun, too. Send regularly just
to say you’re thinking of them. You can even send a packet of self-addressed and stamped postcards for the
kids to write/draw on and send back to you.

WHAT’S ALL THE HYPE ABOUT SKYPE?

First of all, it’s free! All you need is a computer and a webcam and you can place a video call. This beats the
plain old telephone call any day because you get actual face time – and for families separated by miles, there’s
nothing better.

ONCE UPON A TIME

Every kid enjoys having a loved one read aloud his favorite book. This is not just for grandparents who live
nearby. You can do this via Skype. Or you can record yourself (audio/video/both) reading the child’s beloved
story-and mail it to him, along with a handmade bookmark or a photo of you.

SHARE AN INTEREST, PERIODICALLY

Another way to thrill the grand kids with mail is to buy them a subscription to a special magazine – and ask
them to call, Skype or email you each time a new issue arrives. Invite them to tell you about the page they
liked best.

PICTURE THIS
Send a disposable camera and ask your grandchild to take pictures of herself, her family, friends, pets and
favorite things to do. Get the parents to mail the camera back to you. You can develop the photos and make
a little album to send as a gift-or bring it with you on your next visit. You and your grandchild can spend time
together while she explains each photo.

CELEBRATE THE DAY

Nowadays there’s an “awareness day” for practically everything. Did you know that June 21 is National Flip
Flop Day? Bet you didn’t know that July 28 is National Day of the Cowboy! All it takes is knowing what your
grand kid likes and this website address: http://www.national-awareness-days.com and you’ll be “in the know.”
Share this site with the parents and get their input. Your grand kids will be delightfully surprised and they’ll be
left wondering, “How did Grandma know…?” when you send them a card or email noting the special day. Or
kick it up a notch and send your grandchild a copy of “Matilda” by Roald Dahl on September 13 – Roald Dahl
Day, of course!

SAY CHEESE!
Every time you are together with your grandchild(ren), take lots of photos, for sure, but always take a certain
identical pose. For example, a picture of you and your grandchild sitting together reading, talking, eating,
laughing. Whatever. The child will always know what it looks like to be with you. Frame the photos so they can
surround him. If you do this each time you’re together, the child will “grow up with you” in the pictures. Both you
and he will enjoy them.

Down the block or thousands of miles away, we couldn’t do it without you – the mentors and nurturers, role
models and heroes, playmates and wizards. Nana and poppa, gram and gramps, whatever you are called, you
are a wonderful asset in our lives. From the bottom of our hearts, we thank you for everything.

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A Letter to Grandparents of Children

with Autism
This guest post is from Linda Mastroianni who is the founder of
SpeakingAutism.ca and a contributing blogger for Huffington Post Canada.

I am blessed in my life that I have a very strong support system with my family. If it wasn’t for my parents
and my sister, I don’t know how I would have managed half of what I needed to do for son. They were
(and still are) always there for me and for my kids.
Today I’d like to pay a tribute to all the grandparents of children with autism because they too help raise
autism awareness and understanding. They play such a critical role in the family and especially in
supporting us with our children.

To all the grandparents and step-grandparents, this one is for you:

Thank you for being the rock that kept us grounded when our world was turned upside down.
Thank you for adapting your home before anyone even asked you to.
Thank you for the times we found unexpected cooked meals, a clean house and the laundry done;
we are grateful.
Thank you for being there to pick them up at school after a meltdown because we couldn’t leave work.
Thank you for coming with us at therapy for the moral support and to not feel so alone.
Thank you for keeping them overnight so we could sleep in; the respite was much needed.
Thank you for your encouraging words and your endless supply of unconditional love to all of us.
Thank you for making more than one meal because you wanted to make sure they ate something.
Thank you for buying the identical items to keep at your home so we didn’t have carry them around.
Thank you for taking the time to understand the triggers that can cause a meltdown.
Thank you for the countless times you held us while we wept out of frustration and helplessness
that we felt at the lack of services for our children.
Thank you for not judging us when we lost it.
Thank you for educating others about autism because we know it affects you too.
Thank you for always staying strong and never showing your fear or concern in front of us.
We couldn’t have done this without you.
Your strength and unwavering support is what got us through this.
We shine a spotlight on you because you all have played a very significant role in the lives of
your grandchildren.
Please never forget how precious you are to them and to us.

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Have more questions or need assistance?

Please contact the Autism Response Team for
information, resources and tools.

TOLL FREE: 888-AUTISM2 (288-4762)

EN ESPAÑOL: 888-772-9050

Email: [email protected]
AUTISMSPEAKS.ORG/ART

Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span,
for the needs of individuals with autism and their families. We do this through advocacy and support;
increasing understanding and acceptance of people with autism; and advancing research into causes and
better interventions for autism spectrum disorder and related conditions.

To learn more about Autism Speaks, please visit AutismSpeaks.org.