A Friend’s Guide to Autism

An Autism Speaks Family Support Tool Kit

 A FRIEND’S GUIDE TO AUTISM

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 A FRIEND’S GUIDE TO AUTISM

Introduction
A Friend’s Guide to Autism is a tool for friends of
families affected by autism. The guide will provide you
with an overview of autism, information about feelings
your friend might be experiencing, tips to help you
support both the child and family, stories of support
and more.

Autism Speaks is committed to increasing understand-

ing and acceptance of people with autism and their
families and it is friends like you who help fuel this
mission. Thank you for taking the time to learn more
about what your friend is going through and how you
can support his or her family.

If you are looking for additional information, the

Autism Speaks Autism Response Team is here to Some facts about autism 
help connect you with resources to meet your unique • The Centers for Disease Control and Prevention
needs. They can be reached at (CDC) estimates autism’s prevalence as 1 in 59
888-288-4762 children in the United States. This includes
(en Español 888-772-9050) or 1 in 37 boys and 1 in 151 girls.
FamilyServices@[Link]. • An estimated 50,000 teens with autism become
adults – and lose school-based autism services –
You can also find many more tool kits and resources each year.
at [Link].
• Around one third of people with autism remain
nonverbal.

What is Autism?
• Around one third of people with autism have an
intellectual disability.
• Nearly 1/2 of children with autism wander or bolt
Autism, or autism spectrum disorder, refers to a range from safety.
of conditions characterized by challenges with social
• For most, autism is a lifelong condition.
skills, repetitive behaviors, speech and nonverbal
communication. We now know that there is not one Note: In 2013, the American Psychiatric Association
autism but many subtypes, and each person with merged four previously distinct diagnoses into one
autism can have unique strengths and challenges. umbrella diagnosis of autism spectrum disorder(ASD).
Most forms are caused by a combination of genetic These included autistic disorder, childhood disintegrative
and environmental influences, and many are disorder, pervasive developmental disorder-not otherwise
accompanied by medical issues such as GI disorders, specified (PDD-NOS) and Asperger syndrome. 
seizures and sleep disturbances.

Note: In this kit, the umbrella term “Autism” refers to the Pervasive Developmental Disorders, also known as Autism Spectrum Disorders, including Autism, PDD, PDD-NOS,
and Asperger Syndrome. For simplicity, we have also used the generic pronoun “she” when referring to a friend.
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 A FRIEND’S GUIDE TO AUTISM

What Does Autism Look

Like?
Autism affects the way an individual perceives the
world. Autism spectrum disorders are characterized by
social-interaction difficulties, communication - “IF YOU’VE MET ONE PERSON
challenges and a tendency to engage in repetitive WITH AUTISM - YOU’VE MET
behaviors. However, symptoms and their severity vary
widely across these three core areas. Taken together,
ONE PERSON WITH AUTISM.”
they may result in relatively mild challenges for some- Stephen Shore, Ed.D.
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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 A FRIEND’S GUIDE TO AUTISM

How Your Friend

Might Be Feeling
Learning that your child has been diagnosed with
autism is a powerful moment in a parent’s life. The
joy from the birth of a child and the hope for his or her
future is all of the sudden confronted by many
unknowns. Your friend may experience a range of
emotions including:

Shock: “How can this be happening to

my child?”

Sadness or Grief: “I have no energy.”

“I feel overwhelmed by sadness.”

Anger: “We didn’t deserve this.” “I am so

angry this is happening.”

Denial: “He will grow out of this.” “I can fix it.”

What Causes Autism? “The doctors are wrong.”

One of the most common questions asked after a Loneliness: “I have never felt so alone.”
diagnosis of autism, is what caused the disorder. We
Acceptance: “I feel we can get through
know that there’s no one cause of autism. Research
this and be okay.”
suggests that autism develops from a combination
of genetic and nongenetic, or environmental, It is important to know that your friend may be
influences. These influences appear to increase the experiencing many of these feelings and she may have
risk that a child will develop autism. However, it’s different feelings about the diagnosis at different points
important to keep in mind that increased risk is not the in time. This is not something she can control. Her life
same as cause. For example, some gene changes will no longer be the way she thought it would be, so
associated with autism can also be found in people she may need some extra support and understanding
who don’t have the disorder. Similarly, not everyone during these different stages of emotions following the
exposed to an environmental risk factor for autism will autism diagnosis.
develop the disorder. In fact, most will not.
Most genetic and nongenetic influences that give rise
to autism appear to affect crucial aspects of early
brain development. Some appear to affect how brain
nerve cells, or neurons, communicate with each other.
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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What To Do When Your

Friend’s Child is
Diagnosed with Autism
This post is by Katie Read, an autism mom (x2) and Marriage
and Family Therapist in Arizona. She can tell you, from
experience, that diagnosis is a hard time, but it gets better. 

Having received the diagnosis twice, I have compiled the best advice from my personal experiences
and around the internet to help you help your friends through the early days (without putting your foot
in your mouth!). I get it. It’s awkward and uncomfortable and no one knows how to respond. Here are
some basics to get you started...

DO: Call your friend. Ask her how she’s feeling. Let her know that she can vent or cry to you.
We are all afraid of being downers to other people. Knowing someone can handle the
hard stuff means everything.
Bring over a cup of coffee. Or a casserole. Or a bottle of wine. Or fourteen Cadbury
bars. I’ll always remember the friend who came by with Starbucks when she heard. The
little things really do count the most at these hard times.
Keep inviting your friend to all things you would normally do together. Storytime
on Tuesdays? Invite her. Playdate after school? Invite her. Your friend will decide if an
outing is too much—but the worst thing is for her to feel isolated or rejected by the lack
of an invitation.
Treat her child the same way you always have. If this is your nephew and you have
always had free reign to correct his behavior, keep it up! We want our kids to have as
typical a life experience as possible, which means typical experiences with every day
people. Unless or until your friend asks you to treat their child differently, just keep up
business as usual.
If you can offer to babysit, do it. You cannot imagine the to-do list that was just
dumped on your friend’s [Link] means endless phone calls to insurance
companies, state services, school districts, early intervention, speech, PT, OT, endless
coordination of appointments, reams and reams of paperwork, and a whole
reorganization of life as she knows it. And all of this has to be done while she is feeling
grief, fear, and confusion—and still parenting and working and cooking and cleaning
and living life. Even if you can supervise the kiddos downstairs while your friend starts
her list of phone calls upstairs, it will help. A lot.
Do know that your friend is genuinely mourning a loss. I know it’s taboo to say
that early diagnosis is a time of mourning, but honestly, it is. Imagine going from typical
parent dreams—that our kids will be athletes, valedictorians, successful spouses and
parents—to simply wondering if they will ever live on their own, hold down a job, or even
speak. There is grief there. Treat your friend as you would any person going through a
tough time.

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What To Do When You Friend’s Child is Diagnosed with Autism

DO Don’t use a bunch of platitudes to try to make her feel better. “It’ll be all right,
it’s all good, everything happens for a reason, you’re the best person to handle all of

NOT:
this.” These things don’t make us feel better. They might make you feel better to say,
but they make us shut down the actual expression of our feelings, our fears, and our
intense new stress.

Don’t say, “I’m sorry.” Honestly, this doesn’t bother me personally. When people say,
“I’m sorry,” I assume that they mean they are sorry because it must be stressful and
scary and hard—which it is. However, I know that many, many autism parents hear this
differently and find it very offensive. Not worth the risk.

Don’t avoid your friend, assuming they want space. If you give someone space
without first asking if they want space, they basically feel rejected and isolated.
Everyone wants the choice of space. No one wants space forced upon them. Invite
your friend out as you normally would, and do not take it personally if she can’t
participate for a while.

Don’t stop bringing your child around the child with autism. Your child will not
be stunted by hanging out with an autistic child. In fact, your child will definitely have
autistic peers in school, so might as well start their education (and your own practice
of inclusion) now.

Don’t humble-brag/compare/complain about your neurotypical kids. “I’m sure

he’ll start talking. It’s just like how we never thought Billy would win gold at State, but
then he did!”  
No. It’s not.

Don’t assume there is some huge, glowing autism community that has scooped
up your friend and given her a fabulous social life. There isn’t. This disorder is
wildly isolating for families. Plus, even when we meet other autism parents, the
spectrum is so huge and our experiences so different that it’s still often hard to
connect. The lucky ones will find a few great people along this road, but in the early
days, we really need our long-time buddies.

Now call your friend and get to Starbucks and put on your listening ears.
She will remember it forever. I promise.

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“In your lifetime, you will probably know more people and families affected by autism.
You can choose to be part of the solution by helping support a friend, family member or
neighbor. Take the time to learn not just about autism, but the individual child. Make the
decision to accept children with disabilities and teach your children how they can help
children with autism by being a friend too. Making the choice to support a family affected
by autism is one of the greatest gifts you can give. It is also very likely that your act of
kindness may turn out to be one of the greatest gifts you receive back as well.”
Kymberly Grosso, author, blogger, autism mom
[Link]/blog/autism-in-real-life

Supporting the Child Provide your children with information about

how to best interact with the child with autism.

with Autism Keep in mind that not all families tell their child
about his or her diagnosis. The Autism Speaks
School Community Tool Kit has a helpful section
Your friend will appreciate that you want to interact with to help peers of children with autism learn to
and support her child with autism. Here are some interact with and support their friends.
suggestions:

Find out about the interests of the child, and

ask him or her about them. Children with autism
will be more willing to interact to the best of their
ability if you ask them about something that is
important to them.

If she is comfortable sharing, ask your friend

if there are certain triggers that may upset her
child or lead to meltdowns.

Keep your language as simple and concrete

as possible, as people with autism are often very
literal. But be sure to understand the difference
between receptive and expressive language.
Many children and adults with autism who may
not be able to speak are fully capable of under-
standing what you are saying.

Figure out where your friend and her family

are most comfortable. For some families, it is
easier if you go to their houses. Some children
with autism are more comfortable in their own
homes. Some families may want to visit your
home. If this is the case, you may want to ask
your friend how you can make the visit the
most comfortable for her child.
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Stories of Support
“ So many friends, so many stories, but one friend in
particular stands out, my friend Shani. My son Ryan
is 10 years old and was diagnosed with PDD NOS
when he was 6. Ryan is a brilliant boy with an
amazingly sweet heart, which is evident for those
who take the time to get to know him. That is what
stands out about my friend Shani - she always takes
time for Ryan. Regardless of the times he has
ignored her, rebuffed her or yelled at her for getting
the wrong type of pizza, for serving him orange juice
with pulp or for not putting enough Goldfish crackers
in his bowl, Shani “gets” Ryan because she tries. It
teaching her own three kids how to work with him.
is easy for people to overlook Ryan. When he fails to
Taking time off of work to go to an ABA conference
say hello, fails to acknowledge your presence, or just
to better her skills to help Cashius. She let’s me have
completely ignores your question, it is easy for people
my own meltdowns and is always there to help me up
just to walk away or give up. Not Shani, she engages
after I’m done. She is always thinking of new ideas for
Ryan one way or another. She has never treated
Cashius’ meals because of his GFCF diet. Not only
Ryan any differently than she would any other child.
does she make me feel so lucky to have found
There was no secret password, no special trick, no
someone who is so loving and supportive and just
gifts or rewards, just her time, her patience and her
amazing. But the person who is the luckiest is
sincerity, which kids like Ryan can pick up a lot more
readily than one would assume of a child with ASD.
Shani will never understand the depth of my gratitude, Jessica, mom of Cashius
”
Cashius to have her in his life!

respect and love I have for all that she is to me, to

Ryan and to the rest of my family.
Kathy, mom of Ryan
” “ When my son Matthew was diagnosed with autism,
we were lucky enough to get him the many hours of
the therapy that he needed. That meant a stream of

“ My name is Jessica and I have a beautiful,

amazing, sweet, smart, perfect 2-year-old son named
therapists in and out of our home. Also, it meant that
my older son Danny needed to play quietly so that he
didn’t distract his brother. My good friend Ellen also
Cashius who is autistic. I may not have a lot of
has a son Danny’s age, and they are good friends.
support from my son’s father or any member family
Ellen stopped by to drop something off, just as I was
who lives close enough to help, but I have been so
explaining to Danny why he couldn’t have a friend over
blessed to have my best friend Jaymie for the last
while Matthew’s therapists were here. Ellen called
four years be my sole support. She has been by my
me later that night, and asked if Danny could have a
side every step of the way from when I started
standing play date at her house every Thursday while
inquiring to my son’s doctors ‘Shouldn’t he be
Matthew’s therapists were here. I could have cried, I
talking by now?’ or when my family said “Oh, he is a
was so worried about Danny and my friend Ellen knew
boy, they are just late talkers”. She was there telling
me go with MY feelings. She takes my son to
therapies and being involved in countless sessions
just what we needed!
”
Jeanine, mom of Matthew

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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: FAMILYSERVICES@[Link]
[Link]/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 [Link].