100 DAY KIT

You, Your Family

and Autism
How Will I Deal with This
Diagnosis?
You are never prepared for a diagnosis of autism. It
is likely that you will experience a range of emotions.
It is painful to love so much, to want something so
much and not quite get it. You want your child to get
better so badly that you may feel some of the stages
commonly associated with grieving. You may “revisit”
these feelings from time to time in the future. Part of
moving forward is dealing with your own needs and
emotions along the way.

Denial
Stages associated with grieving You may go through periods of refusing to believe
Elisabeth Kübler-Ross, M.D., a Swiss-American what is happening to your child. You don’t con-
psychiatrist, outlined five stages in the grief process. sciously choose this reaction; it just happens. During
Grief does not progress in an orderly way that follows this time, you may not be able to hear the facts as
a predictable path. It is normal to move forwards and they relate to your child’s diagnosis. Don’t be critical
backwards among the five stages, skip a stage or be of yourself for reacting this way. Denial is a way of
stuck in one. Her five stages are outlined here. coping. It may be what gets you through a particularly
difficult period. You must, however, be aware that
you are in denial, so that it doesn’t cause you to lose
focus on your child’s treatment. Try not to “shoot the
messenger.” When a professional, a therapist or a
teacher tells you something that is hard to hear about
your child, consider that he or she is trying to help
you so that you can address the problem. It is impor-
tant not to alienate people who can give you helpful
feedback and help monitor your child’s progress.
Whether you agree or not, try to thank them for the
information. If you are upset, try considering the infor-
mation when you have had a chance to calm down.
 100 DAY KIT

Anger
With time, your denial may give way to anger. of moving forward. Allowing yourself to feel sadness
Although anger is a natural part of the process, you can help you grow. You have every right to feel sad
may find that it’s directed at those closest to you – and to express it in ways that are comfortable.
your child, your spouse, your friend or at the world Crying can help release some of the tension that
in general. You may also feel resentment toward builds up when you try to hold in sadness. A good cry
parents of typical children. Your anger may come out can get you over one hurdle and help you face the
in different ways – snapping at people, overreacting next. If you find that your sadness is interfering with
to small things, even screaming and yelling. Anger your ability to cope or you show other symptoms of
is normal. It is a healthy and expected reaction to depression, such as weight loss, social withdrawal,
feelings of loss and stress that come with this diag- suicidal thoughts, sleep difficulties, low self-esteem or
nosis. Expressing your anger releases tension. It is loss of interest in daily activities, consult your family
an attempt to tell the people around you that you hurt physician who can recommend treatment.
and are outraged that this diagnosis has happened
to your child. “­ My husband had a harder time
accepting our son’s diagnosis at first.
“I felt angry when a child at my son’s When Max began making progress
school was diagnosed with Leukemia in his ABA program, everything changed
around the time our son was diagnosed for the better. For a while, I was the
with autism. Everyone sent cards and one holding everything together for
cooked dinners for them. They didn’t all of us.”
know I needed that kind of help too.
When I let people know I needed help
Acceptance
they came through for me.” Ultimately, you may feel a sense of acceptance. It’s
helpful to distinguish between accepting that your
Bargaining child has been diagnosed with autism and accepting
This stage involves the hope that the diagnosis can autism. Accepting the diagnosis simply means that
be undone. The feeling of helplessness you may be you are ready to advocate for your child. The period
experiencing might create a need to regain control following an autism diagnosis can be very challeng-
of the situation. Many parents will ask themselves ing, even for the most harmonious families. Although
questions like: What if we had gotten our child in to the child with autism may never experience the nega-
the doctor earlier? What if it was caused by some- tive emotions associated with the diagnosis, parents,
thing we did? You may also question the diagnosis or siblings and extended family members may each
search for another doctor hoping that he or she might process the diagnosis in different ways, and at differ-
tell you something different. ent rates. Give yourself time to adjust. Be patient with
yourself. It will take some time to understand your
Sadness or Grief child’s disorder and the impact it has on you and your
Many parents must mourn the loss of some of the family. Difficult emotions may resurface from time to
hopes and dreams they had for their child before time. There may be times when you feel helpless and
they can move on. There will probably be many times angry that autism has resulted in a life that is much
when you feel extremely sad. Friends may refer to different than you had planned. But you will also
this as being “depressed,” which can sound frighten- experience feelings of hope as your child begins to
ing. There is, however, a difference between sadness make progress.
and depression. Depression often stands in the way
 100 DAY KIT

Caring for the Caregiver

Changing the course of the life of your child with Here are some tips from parents who
autism can be a very rewarding experience. You are have experienced what you are
making an enormous difference in his or her life. To
make it happen, you need to take care of yourself.
going through:
Take a moment to answer these questions: Where
Get going.
does your support and strength come from? How are
Getting your child started in treatment will help. There
you really doing? Do you need to cry? Complain?
are many details you will be managing in an intensive
Scream? Would you like some help but don’t know
treatment program, especially if it is based in your
who to ask?
home. If you know your child is engaged in meaning-
ful activities, you will be more able to focus on
Remember that if you want to take moving forward. It may also free up some of your
the best possible care of your child, time so you can educate yourself, advocate for your
you must first take the best possible child and take care of yourself.
care of yourself.
Ask for help.
Parents often fail to evaluate their own sources of Asking for help can be very difficult, especially at first.
strength, coping skills or emotional attitudes. You Don’t hesitate to use whatever support is available to
may be so busy meeting the needs of your child that you. People around you may want to help, but may
you don’t allow yourself time to relax, cry or simply not know how. Is there someone who can take your
think. You may wait until you are so exhausted or other kids somewhere for an afternoon? Or cook
stressed out that you can barely carry on before you dinner for your family one night so that you can
consider your own needs. Reaching this point is not spend the time learning? Can someone pick a few
helping you or your family. You may feel that your things up for you at the store or do a load of laundry?
child needs you right now, more than ever. Your “to Or let other people know you are going through a
do” list may be what is driving you forward right now. difficult time and could use a hand?
You may feel completely overwhelmed and not know
where to start. There is no single way to cope. Each Talk to someone.
family is unique and deals with stressful situations Everyone needs someone to talk to. Let someone
differently. Getting your child started in treatment will know what you are going through and how you feel.
help you feel better. Acknowledging the emotional Someone who just listens can be a great source of
impact of autism and taking care of yourself during strength. If you can’t get out of the house, use the
this stressful period will help prepare you for the chal- phone to call a friend.
lenges ahead. Autism is a pervasive, multi-faceted Consider joining a support group.
disorder. It will not only change the way that you look It may be helpful to listen or talk to people who have
at your child, it will change the way you look at the been or are going through a similar experience.
world. Maintaining open and honest communication Support groups can be great sources of information
with your partner and family as well as discussing about what services are available in your area and
your fears and concerns will help you to deal with the who provides them. You may have to try more than
many changes in your life. As some parents may tell one to find a group that feels right to you. You may
you, you may be a better person for it. The love and find you aren’t a “support group kind of person.” For
hope that you have for your child make you stronger many parents in your situation, support groups
than you realize. provide valuable hope, comfort and encouragement.
 100 DAY KIT

You may also want to consider attending a recre- Consider keeping a journal.
ational program for children with autism. This may Louise DeSalvo, in Writing as a Way of Healing, notes
be a good way to meet other parents just like you. that studies have shown that: “Writing that describes
traumatic events and our deepest thoughts and feel-
One study from Vanderbilt University, a part of the
ings about them is linked with improved immune
Autism Speaks Autism Treatment Network, found that
function, improved emotional and physical health, and
mothers of children with autism benefit significantly
positive behavioral changes.” Some parents have
from weekly stress-reduction classes led by other
found a journal to be a helpful tool for keeping track of
mothers. The classes reduced previously high levels
their child’s progress, what is working and what isn’t.
of personal stress, anxiety and depression and im-
Be mindful of the time you spend on the internet. The
proved the mom’s interactions with their children.
internet will be one of the most important tools you
have for learning what you need to know about autism
“At my support group I met a group of and how to help your child.
women who were juggling the same Unfortunately, there is more information on the web
things I was. It felt so good not to feel than any of us have time to read in a lifetime. There
may also be a lot of misinformation.
like I was from another planet!”
As a parent, always remember to trust your gut.
You may find a listing of support groups in There are many paths to take, treatment options and
the Autism Speaks Resource Guide at opinions. You know your child best. Work with your
autismspeaks.org/resource-guide. Another child’s treatment team to find what works best for your
avenue is through the local SEPTA (Special child and your family.
Education Parent Teacher Association) in
your school district or online through the Right now, while you are trying to make the most of
Autism Speaks Facebook page at every minute, keep an eye on the clock and frequently
facebook.com/autismspeaks. ask yourself these important questions:
Is what I’m reading right now very likely to be
My Autism Team, the social network for parents
relevant to my child?
of kids with autism, is another great resource.
On this site, parents of children with autism Is it new information?
share their experiences, including their reviews Is it helpful?
of local service providers, to help inform the
Is it from a reliable source?
parents in their communities. Visit the site at
myautismteam.com. Sometimes, the time you spend on the internet will
be incredibly valuable. Other times, it may be better for
Try to take a break. you and your child if you use that time to take
If you can, allow yourself to take some time away, care of yourself.
even if it is only a few minutes to take a walk. If it’s
possible, getting out to a movie, going shopping or The internet will be one of the most im-
visiting a friend can make a world of difference. If you portant tools you have for learning what
feel guilty about taking a break, try to remind your-
self that this break will help you feel renewed for the
you need to know about autism and how
things you need to do when you get back. Try to get to help your child.
some rest. If you are getting regular sleep, you will
be better prepared to make good decisions, be more
patient with your child and more able to deal with the
stress in your life.
 100 DAY KIT

Becoming Resilient During

Times of Adversity
by Dr. Peter Faustino, school psychologist, state delegate to the
National Association of School Psychologists (NASP) and member
of the Autism Speaks Family Services Committee

Resiliency, or finding ways to properly adapt to Having trustworthy information and feeling more
challenges or stress in your life, is a process, not a competent (not only about autism but in other
character trait. Research has revealed several key el- aspects of your life) can be critical in maintaining a
ements in fostering resilience and by considering the hopeful outlook.
following, you will find you are not only helping your
child but yourself and your entire family. Care: Eventually, your journey will lead to a place
where you can balance negative emotions with
Connectedness: One of the strongest pillars in positive ones. Taking care to avoid seeing an event
resilience is having positive relationships or feeling as unbearable or unchangeable versus looking for
connected to others. While the diagnosis of autism opportunities and considering the event in a broader
may be extraordinary at first, it no longer is synony- context can be an important factor to resilience.
mous with being alone or having few places to turn Positive attitudes such as encouraging yourself to
for help. This tool kit is only one example of the ways try, being determined to persevere until success is
in which Autism Speaks can lend support. Regional attained, applying a problem solving approach to
chapters of Autism Speaks all across the country can difficult situations and fostering feelings of determi-
open up doors to other parents, families and com- nation or grit are critical. Care also refers to parents
munities who have experience with navigating the attending to their own mind and body, exercising
autism diagnosis. When relationships with friends, regularly, as well paying attention to basic needs
neighbors and family are based on mutual, reciprocal and feelings.
support and care, they can bolster resiliency.
Resilience is the result of individuals being able to
Competence: Whenever a challenge presents itself, interact with their environments and the processes
individuals can feel a loss of control over the situa- that either promote wellbeing or protect them against
tion and their lives. Competence or at this early stage overwhelming influence of risk factors. In many
learning about autism and then taking action on cases, adversity can act as a spring board for growth
realistic goals will help you gain a sense of control. and success, not only in our children, but in ourselves
as well.
 100 DAY KIT

“Is Your Son On the Spectrum?”

In her own words,
Alysia K. Butler, who has a recently diagnosed son, describes her
experience being part of the autism community.

The question was slightly jarring to me. My son and I in my eyes. We did belong here. This was the right
had just walked into a gymnastics class for kids with place for him. We had found a safe place for him to
autism. We had received his diagnosis only three exercise and develop his muscles in an environment
weeks before and we hadn’t shared our news with that understood his special needs. For so long we
anyone except for close friends and family. It was the had avoided the “regular” gym classes, music classes
first time we had been anywhere that was just for kids and playgroups because of his behavior. No one here
like mine and I wasn’t really ready to talk to a total was giving me the usual disapproving looks we get
stranger about it. when we’re out places and Henry starts to act up. I
took a deep breath and turned to the mom.
“Yes,” I answered, trying to keep
“Hi! My son Henry was diagnosed with PDD-NOS a
the conversation short.
few weeks ago. We do live in town. In fact, I’ve seen
“Hi and welcome! That’s my son over there and my your son at the preschool that my son attends. How
name is Sandy. How old is your son? Do you live long has your son attended classes here?”
in town? How long have you known your son was
It took everything I had to have that conversation, but
on the spectrum? What was his diagnosis?” I re-
it was such a relief. This other mom was reaching out
ally didn’t want to answer her. I wasn’t even sure we
to make a connection – to find someone else who
belonged at this class and all I wanted to do was pay
struggles on a daily basis like she does – something
attention to my son to see how he was responding
I myself had been desperate to do for weeks and
to the class. I watched the other kids as they came
months. I was instantly welcomed into a community
in – six boys and one girl – and my first instinct was
of people who “get it.” No one batted an eye when
that we were in the wrong place. One little boy was
Henry buried himself under the foam blocks at the
crying, another was spinning in circles and another
end of class so he didn’t have to leave. I got comfort-
one was running in all different directions. My son‘s
ing looks of understanding from all the parents and
not like that, I thought to myself. This isn’t us.
teachers when he had a major meltdown leaving
And then I looked at my Henry. I watched him hold the gym and big thumbs up from everyone when we
tightly to his one-on-one helper’s hand as they finally got our shoes on and went out the door. These
walked on a low balance beam, but he wouldn’t look were moms and dads who shared my daily difficul-
her in the eye when she talked to him. I watched ties of just getting out of the house. Finally, we were
him try to run away to jump into the comfort of the somewhere that felt like we belonged.
sensory foam blocks and become so focused on that
foam pit that he couldn’t move on to anything else. “Will we see you next week?” asked
I listened to him babble while he swayed back and the mom.
forth on the rings and saw the terror in his face when
the noise level got up too high. The tears welled up
“Absolutely,” I replied.
 100 DAY KIT

What Should We Know

About our Younger or
Future Children?
As discussed below, genetic risk factors contribute
to autism. If you are expecting another child or have
plans to expand your family in the future, you may
be concerned about the development of any younger
siblings of your child with autism. Studies show that
if you have a child diagnosed with an autism spectrum
disorder, the risk of the next child also being diag-
nosed with an ASD is between 10 and 20%. The risk
for ASD is higher for boys than girls and for baby sib-
lings who have more than one older sibling with ASD.
However, statistics are changing and there are several exponentially over the past decade, supported by
ongoing research studies that are studying the recur- the formation of the consortium, which has enabled
rence rate or likelihood that autism will be diagnosed researchers from around the world to meet and
in a second or third child. For the most recent findings share their ideas, methods and data. Consortium
and updated research on the rate of recurrence and members carry out their own studies focusing pri-
susceptibility of autism in siblings, please visit marily on younger siblings of children with ASD or
earlistudy.org. The EARLI study is a nationwide effort other high risk infants. Each member is supported
to investigate the genetic and environmental contribu- by public, private or foundation funding. The group
tions to autism in a high risk group, that is, younger collaborates on studies and publications, pooling
siblings of children who have received a diagnosis. collective data and knowledge to enhance the ability
to contribute to this important area of research and
More recent evidence has suggests that distinct early provide help to families.
signs of autism may be seen in some children as
young as 8 to 10 months of age. For example, infants In 2007, a group of researchers within the BSRC,
who later develop autism may be more passive, more together with psychologists from around the U.S.,
difficult to soothe or may fail to orient when their name formed the Autism Speaks Toddler Treatment
is called. Some of these early signs may be noticed by Network (TTN). The goal of the network is to deter-
parents, others may only be observed with the help of mine whether intervention between the ages of 18
a trained clinician. These signs become more pro- to 24 months affects developmental outcomes at an
nounced by 18 to 24 months. age when autism can be more reliably diagnosed.
Today, the network involves more than 60 investiga-
Through a joint venture between Autism Speaks and tors from around the world studying the effective-
the National Institute of Child Health and Human De- ness of early intervention and the utility of parent-
velopment, research on the early signs and symptoms mediated approaches. They have begun to shift their
of autism has been accelerated. Called the focus from research in the clinic to implementation
High Risk Baby Siblings Research Consortium in “real life” community settings, so more people can
(BSRC), the goal is to improve the lives of individu- benefit from them.
als affected with ASD by making discoveries that will
help researchers develop new ways to treat or even
prevent some debilitating symptoms by intervening
at an early age. The pace of this research has grown
 100 DAY KIT

If you are interested in participating in a research

project studying the earliest signs of autism, visit
AutismSpeaks.org/science/research-initiatives/
high-risk-baby-sibs or find a research project in
your area at
autismspeaks.org/science/participate-
in-research.

These studies provide intense observation,

documentation and feedback by experts in the field
on the development of your child with autism and
any other children at risk for autism.

If you are interested in other intervention reacted to my son’s diagnosis. Everyone asked what
programs that are not part of these studies, visit they could do to help and they showed us so much
the Resource Guide on the Autism Speaks web- support. I know his grandparents read books and
site to help find an early intervention program in articles on the disorder so they could better under-
your area. autismspeaks.org/resource-guide. stand him. My mother even quit her job to help me
through this very difficult time.” Yes, reactions vary
widely. But whatever reaction you get, it will be very
important to educate your parents about the nature of
How Will This Affect Our autism after you have told them about the diagnosis.
To begin your discussion, you might talk about spe-
Family? cific behaviors. For example: “You know those be-
haviors we’ve been confused about for so long? Well,
Even though it is your child who has the diagnosis, now we have a name for them and an explanation for
it is important to acknowledge that autism affects the why they occur. Howie doesn’t act the way he does
whole family. This section of your tool kit may help because he’s spoiled or because he’s shy or because
you anticipate some of the emotions you and other he doesn’t like us – he acts that way because he has
people in your family will experience. autism. Autism explains why he doesn’t speak or use
gestures and why he doesn’t seem to understand
The article below, adapted from Does My Child Have what we say. It explains why he’s not as interested in
Autism? by Wendy L. Stone, Ph.D., provides some interacting with us as the other children in the family
helpful information for talking to your parents and have been and why he plays with spoons and bottles
close family members about the diagnosis. instead of toys. I know this is upsetting news for all of
us. But the good news is that the disorder has been
Breaking the news diagnosed early and there are a lot of things we can
do to help him. He’ll be starting some therapies soon
Sometimes telling your parents about your child’s and I’ll be learning about things I can do to help him
diagnosis can be extremely difficult, especially with at home. I know that you will need some time to think
your own emotions running so high. It’s hard to know about all of this. But if you have any questions as we
what to expect; I’ve seen that parental reactions to begin his therapy, I’ll be glad to try my best to answer
this news can vary dramatically. One young mother them. I know we’re all hoping for the best outcome
told me, “My mother-in-law told us that we shouldn’t possible.” After the initial conversation about this
bring my son to family gatherings until he grows up. diagnosis, continue to keep your other children and
It’s heartbreaking to hear her say that she would your extended family in the information loop.
rather not see any of us for years instead of trying
to understand her own grandson.” But then I’ve also Autism doesn’t affect only one child.
been told, “We were very touched by how our family
It affects the entire family.
 100 DAY KIT

Sharing Your Struggle with Family and Friends

The following excerpt from the book Overcoming Autism, by Lynn Kern Koegel, Ph.D.
and Claire LaZebnik, offers suggestions for how to tell people and explains why, for
some people, it can make life easier for you and your friends.

You should, you know. Tell people. You don’t have Real friends don’t love you more for being success-
to walk up to strangers on the street or anything, but ful or less for having problems. If anything, it works
confide in the people who love you. That was one the opposite way – we’re all so busy that sometimes
thing we did right: we told our families and our friends we forget to stay in touch with friends when every-
right away. First we called them, and then we copied a thing’s fine for them, but we rush forward when they
good comprehensive article someone wrote about need us. Now is the time to take advantage of that.
autism and annotated it with specifics about Andrew, Talk your friends’ ears off, complain, bitch and moan
and we mailed it out to everyone we knew. (You could to them. You’re dealing with a huge challenge, take
do the same things with sections from this book, by advantage of every minor plus it has to offer.
the way.) None of our good friends pulled away from
us because our kid had autism. Just the opposite – Some families have downloaded this Autism
our friends and families rallied around us in amazing Speaks 100 Day Kit and sent it to their family
ways and have continued to cheer Andrew’s progress members and close friends to provide more
on year after year. In all honesty, telling people what information about autism and what their
we were going through only made our lives easier. family may be going through. The kit can be
Before then, we worried that Andrew’s occasionally downloaded at autismspeaks.org/family-services/
aberrant behavior was off-putting. But once he had a tool-kits/100-day-kit.
formal diagnosis, everyone cut us a lot of slack, and
instead of wondering what the hell was wrong with
us as parents, most people we knew admitted to a
newfound respect for us for dealing with so much.
 100 DAY KIT

15 Tips for Your Family

As a result of her work with many families who deal
so gracefully with the challenges of autism, family
therapist Kathryn Smerling, Ph.D., offers five tips for
parents, five for siblings and five for extended family
members:

5 tips for parents

1. Learn to be the best advocate you can be for your
child. Be informed. Take advantage of all the services
that are available to you in your community. You will
meet practitioners and providers who can educate
you and help you. You will gather great strength from
the people you meet.

2. Don’t push your feelings away. Talk about them.

You may feel both ambivalent and angry. Those are
emotions to be expected. It’s okay to feel conflicting
emotions.

3. Try to direct your anger towards the disorder and

not towards your loved ones. When you find yourself
arguing with your spouse over an autism related
issue, try to remember that this topic is painful for
both of you; and be careful not to get mad at each yourself. Make friends with other parents who have
other when it really is the autism that has you so children with autism. By meeting other parents you
upset and angry. Try to have some semblance of an will have the support of families who understand your
adult life. Be careful to not let autism consume every day to day challenges. Getting involved with autism
waking hour of your life. Spend quality time with your advocacy is empowering and productive. You will be
typically developing children and your spouse and doing something for yourself as well as your child by
refrain from constantly talking about autism. Every- being proactive.
one in your family needs support and to be happy
despite the circumstances.
“Learning more about my child’s
4. Appreciate the small victories your child may unique needs and abilities along with
achieve. Love your child and take great pride in each
reaching out for support has enabled
small accomplishment. Focus on what he or she can
do instead of making comparisons with a typically my husband and me to be better
developing child. Love your child for who he or she is. parents to our son and better partners
for each other on this journey.”
5. Get involved with the autism community. Don’t
underestimate the power of “community”. You may be
the captain of your team, but you can’t do everything
 100 DAY KIT

5 tips for brothers and sisters

1. Remember that you are not alone! Every family is
confronted with life’s challenges… and yes, autism is
challenging…but, if you look closely, nearly everyone
has something difficult to face in their families.

2. Be proud of your brother or sister. Learn to talk

about autism and be open and comfortable describ-
ing the disorder to others. If you are comfortable with
the topic…they will be comfortable too. If you are
embarrassed by your brother or sister, your friends
will sense this and it will make it awkward for them.
If you talk openly to your friends about autism, they
will become comfortable. But, like everyone else,
sometimes you will love your brother or sister and
sometimes you may not like him or her. It’s okay to
feel your feelings. And often it’s easier when you
have a professional counselor to help you understand
them – someone special who is here just for you!
Love your brother or sister the way he or she is!
“At first I felt lost and confused about
3. While it is okay to be sad that you have a brother my brother but now that my parents
or sister affected by autism, it doesn’t help to be have helped to explain things to me, I
upset and angry for extended periods of time. Your can be a better big brother and help my
anger doesn’t change the situation; it only makes you brother when he needs it.”
unhappier. Remember your Mom and Dad may have
those feelings too.
5. Find an activity you can do with your brother or
4. Spend time with your parents alone. Doing things sister. You will find it rewarding to connect with your
together as a family with and without your brother or brother or sister, even if it is just putting a simple
sister strengthens your family bond. It’s okay for you puzzle together. No matter how impaired he or she
to want alone time. Having a family member with may be, doing something together creates a close-
autism can often be very time-consuming and ness. Your brother or sister will look forward to these
attention-grabbing. You need to feel important too. shared activities and greet you with a special smile.
Remember, even if your brother or sister didn’t have
autism, you would still need alone time with Mom
and Dad.
 100 DAY KIT

5 tips for grandparents and extended

family members
1. Family members have a lot to offer. Each family
member is able to offer the things he or she learned
to do best over time. Ask how you can be helpful to
your family. Your efforts will be appreciated whether
it means taking care of the child so that the parents
can go out to dinner or raising money for the
special school that helps the child. Organize a lunch,
a theatre benefit, a carnival or a card game. It will
warm your family’s hearts to know that you are
pitching in to create support and closeness.

2. Seek out your own support. If you find yourself

having a difficult time accepting and dealing with the
fact that your loved one has autism, seek out your
own support. Your family may not be able to provide
you with that kind of support, so you must be con- 5. Carve out special time for each child. You can
siderate and look elsewhere. In this way you can be enjoy special moments with both typically developing
stronger for them, helping with the many challenges family members and the family member with autism.
they face. Be open and honest about the disorder. Yes, they may be different, but all of the children
The more you talk about the matter, the better you look forward to spending time with you. Children with
will feel. Your friends and family can become your autism thrive on routines, so find one thing that you
support system…but only if you share your thoughts can do together that is structured, even if it is simply
with them. It may be hard to talk about it at first, but going to a park for 15 minutes. If you go to the same
as time goes on, it will be easier. In the end, your park every week, chances are over time that activity
experience with autism will end up teaching you will become easier and easier…it just takes time and
and your family profound life lessons. patience. If you are having a difficult time trying to
determine what you can do, ask your family. They will
3. Put judgment aside. Consider your family’s feel- sincerely appreciate the effort that you are making.
ings and be supportive. Respect the decisions they
make for their child with autism. They are working There are also specialized tool kits for specific
very hard to explore and research all options and people in your life. To access them visit:
are typically coming to well thought out conclusions. autismspeaks.org/family-services/tool-kits/family-
Try not to compare children. (This goes for typically support-tool-kits.
developing kids as well.) Children with autism can
be brought up to achieve their personal best. “Talking to other grandparents helped
me to feel part of a bigger community
4. Learn more about autism. It affects people of all and to learn more about my grand-
social and economic statuses. There is promising
research, with many possibilities for the future. Share
daughter. I am now able to help my
that sense of hope with your family, while educating family the best I can and spend quality
yourself about the best ways to help manage this time with each of my grandchildren.”
disorder.
 100 DAY KIT

Developmental Milestones: Some parents express difficulty in understanding

Understanding Your Child’s whether their child’s behavior is developmentally

appropriate or related to his or her diagnosis of an

Behavior autism spectrum disorder. This can lead to increased

frustration and uncertainty of how to respond to specif-
ic behaviors. Based on a child’s developmental level,
When a child is diagnosed with ASD, it can be difficult parents are able to better assess whether their child’s
to figure out which symptoms are a result of autism behavior is developmentally appropriate or warrants
and which are just typical for development. The further discussion with their pediatrician. For example,
information below from Ashley Murray, Psy.M., Emily it can be helpful for parents to know that it is develop-
Schreiber, M.A. and Rebekah Ridgeway, Psy.D. can mentally appropriate for a two-year-old child to begin
help parents to navigate these behaviors. testing his or her parents’ limits and having temper
tantrums (e.g., dropping to the floor, crying, pounding
fists). However, this behavior is not considered de-
velopmentally appropriate if your child is in his or her
middle school years. Additionally, in terms of social
interaction, it is considered developmentally appropri-
ate for one-year-olds to enjoy playing by themselves
with toys. However, by preschool age, children should
be engaging in cooperative play with others.

Oftentimes parents of children with autism spectrum

disorders have the most difficulty determining if their
child’s social and emotional development is appropri-
ate for his or her age or if the child’s behaviors are
related to the diagnosis. To help make this distinction,
understanding developmental milestones for these
two areas can be useful. The following chart presents
social and emotional developmental milestones and
is separated by the child’s age. Having resources to
identify developmental milestones can aid parents
in assessing their child’s behavior and determining if
they should seek additional support for their concerns.

If your child is demonstrating behavior that you be-

lieve is not developmentally appropriate, it is always
important to discuss this with your pediatrician and
other members of the treatment team. Your team may
be able to make suggestions on how best to address
these concerns and make referrals as needed for ad-
ditional evaluations. Additionally, if you have concerns
regarding other areas of your child’s development,
your treatment team can provide you with expected
milestones in all areas of development.
 100 DAY KIT

Birth to 6 Months 2 Years to 3 Years

- Shows excitement by waving arms, kicking - Begins to develop a sense of independence
and wiggling - Enjoys praise
- Fears loud or unexpected noise, strange - Tests parental limits and has an increased
objects, sudden movements and pain level of emotion (e.g., laughing, temper
- Imitates smiles, other’s movements tantrums, crying)
- Enjoys interactions (e.g., smiles, tickles, - Is fearful of loud noises, quick movements,
being held) with others large animals and separation from caregiver
- Laughs out loud and smiles socially - Tries to “help” adults with actions (e.g., washing
- Plays peek-a-boo dishes, vacuuming, hammering)

- May enjoy looking at themselves in the mirror - Plays with objects in symbolic play (e.g., play-
ing house, using toy tools to “make repairs”)
- Responds to other people’s emotions

3 Years to 4 Years
6 Months to 1 Year
- Begins to develop more independence
- Becomes unhappy when the primary and self-reliance
caregiver leaves
- May be fearful of strangers, animals and
- Withdraws from strangers the dark
- Enjoys being held and cuddled - Has a desire to please adults
- Begins to imitate behaviors of others - Shows a wide range of emotions
- May push, pull or poke other children - May become upset with major changes
- Is able to distinguish familiar people in routine
from strangers - Begins to enjoy playing in groups
- When loses a toy, may display a reaction - Becomes more interested in others
- With prompting, begins to share and take turns
1 Year to 2 Years
- May pretend to act out scenes from movies
- Seeks out attention of his or her primary or beginning dramatic play (e.g., pretending
caregiver or an adult he or she feels to be animals)
comfortable with
- Begins to develop a level of trust in others
References
- Has temper tantrums
Division of Birth Defects, National Center on Birth Defects and
- Is generally in a happy mood, but may Developmental Disabilities and Centers for Disease Control and
become angry when others interfere with Prevention (2014). Learn the Signs. Act Early. Milestones Check-
his or her activities list. Developmental Milestones. Retrieved April 16, 2014 from
- May become frustrated due to not being cdc.gov/ncbddd/actearly/milestones/index.html
able to fully verbalize his or her thoughts Feldman, R. S. (2012). Child development (6th ed.). Boston, MA:
and wants University of Massachusetts Amherst.
- May be possessive of toys and enjoy Public Broadcasting Service (n.d.). Social and Emotional Devel-
playing alone opment. The Whole Child. Retrieved April 16, 2014 from
pbs.org/wholechild/abc/social.html
- Enjoys interacting with familiar adults
Washington State Department of Social and Health Services
(n.d.).The Child Development Guide. Using the Child Develop-
ment Guide. Retrieved April 16, 2014 from dshs.wa.gov/ca/
fosterparents/training/chidev/cd06.htm