Supporting Siblings of Children with Autism
Supporting Siblings of Children with Autism
and autism:
a parent’s guide to supporting siblings
ORGANIZATION FOR
AUTISM RESEARCH
Brothers, sisters, and autism
Having children with and without autism comes with a unique set of challenges.
You’re not only faced with doing what’s best for your child with autism, but also
with paying attention to the needs of any brothers or sisters. No matter what you
call them (neurotypical, typically developing, normal, etc.), these siblings are often
dealing with the same struggles and feelings that you do as parents. They, too, feel
a sense of loss, confusion, and frustration – all at a time before they’ve had a chance
to develop comparable coping skills. These future advocates, potential caretakers,
and lifelong friends will establish the longest lasting relationship with your child on
the spectrum. Therefore, they need guidance and support from the start. You’re likely
to find that supporting your children without autism will prove to be a long-term
investment in your child with autism.
1
1. Explaining autism
2 3
2. Family life
“It’s not FAIR!” Remember that little signs of affection can go a long
way. Taking a second to say something as simple as,
Children in all kinds of families have a unique ability
“I’m so proud of you” can be very meaningful. One-
to sense discrepancies in fairness. From chore
on-one time with you can be a huge boost, but it
distributions to bedtimes, chances are your children
may also sometimes be difficult to schedule. If time is
will be acutely aware of who gets more or less of
short, strive for consistent bits of time each day. Many
something. When a child has autism, the perceived
parents master the art of stealthily manufacturing
unfairness at home can seem monumental to their
personal time with their other children, such as
siblings. To them, special teachers, special toys, and
bringing them along to run errands or buy groceries.
fewer chores are unfair “luxuries” afforded to their
Car time is also a great opportunity for check-ins and
brother or sister with autism.
giving one child your undivided attention. Kids will
eventually come to understand that their sibling with
It’s important to address these frustrations as they autism may require more of your attention, but that
come up. Your children without autism will often does not mean they get more of your love.
need to be reassured that they are just as important
and as loved as their sibling with autism. It may also
help to explain that what appears to be “playtime”
can actually be a lot of hard work for your child with
autism, and probably isn’t as fun as it looks. Try Parents share concerns about
explaining therapy appointments, giving each of your family life:
children one-on-one time, and ensuring that everyone • “Sometimes we don’t do certain activities
does their share of chores (no matter how trivial). together as a family – like taking a boat ride
You may want to remind your child without autism – because of her anxiety, so the family has
that while their sibling has therapists who come to to separate into two groups. That can be
the house and “play,” everyone in the family gets to hard on us as parents.”
participate in their fair share of special activities.
• “We certainly spend a disproportionate
amount of time taking care of his brother,
Sharing your attention which takes time away from him. He has
A big struggle for your children without autism can to be more self-reliant, he has to tolerate
be the feeling that their brother or sister with autism his brother’s outbursts and the lack of
is getting more of your attention. There is likely some understanding about boundaries.”
truth to this, considering that children with autism • “[The] amount of time my son needs takes
often have busy schedules full of appointments, parental attention away from her. She’s had
therapy sessions, and at-home support. Kids don’t to grow up faster.”
always recognize this as their brother or sister with
autism engaging in hard work. Instead, it can appear
as if their sibling just gets more of their parents’ love
and time.
3
2. Family life
Recognizing differences
For more on fairness and attention: Siblings of children with autism are as diverse as
their brothers and sisters. Each of your children
Giving Siblings Attention will experience having a sibling on the spectrum
Source: Sibs, a UK-based organization in a different way. This experience is influenced
dedicated to helping the siblings of individuals by a variety of factors, such as gender and age
with special needs of all kinds, including autism difference. You may find that your daughter
steps into the nurturing role with ease, while
What it offers: Tips and ideas for parents about your son wants very little to do with his brother
giving their children without autism love and or sister with autism – or vice versa. There is
attention despite the hectic schedule that a sibling also a tendency for younger children to model
with autism brings their behavior on their older sibling, regardless
of whether or not they have autism. It can
Link: [Link] therefore be very difficult for children if they find
themselves getting reprimanded for copying their
Trying to be Fair sibling’s behavior, while their sibling is seemingly
allowed to do as he or she pleases.
Source: Raising Children Network, a parenting
website based in Australia
It’s important for parents to observe and listen
What it offers: Advice on finding fairness and to how each child reacts towards their brother
maintaining balance between your children with or sister with autism. Keep your expectations
autism and their siblings flexible, and try not to assume that one child’s
Link: [Link] reaction will be the same as another’s. While one
child may be more outwardly caring towards
his or her sibling with autism, it may not be as
easy for your other children to feel that kind of
compassion. Ensure that you acknowledge and
validate each child’s feelings. Doing so will help
them work through some of the more challenging
aspects of having a sibling on the spectrum.
4
3. Out in public
Embarrassment
It’s natural for siblings to unintentionally embarrass For more tips on family time, going
one another, but when the embarrassment stems out, and embarrassment, check out:
from autism, brothers or sisters may feel conflicted.
I get embarrassed about my sibling on
Your children without autism may not only feel
embarrassed, but also guilty for feeling embarrassed. the spectrum. Help!
They may resent when their brother or sister acts out Source: The Den, a site for individuals on
in public. Stimming, meltdowns, and things that may the spectrum (and their friends and family)
look “odd” to strangers can all be hard for siblings to that provides guidance on social, work,
deal with.
and life issues
What it offers: Advice for siblings on
All families have their quirks, even if some are more
visible than others. Let your children know that it’s how to deal with embarrassment, as well
okay to feel embarrassed. If they feel comfortable as some tips for making outings go as
explaining autism or their sibling’s behaviors to smoothly as possible
strangers, equip them with enough information and Link: [Link]
confidence to do so. Some siblings may even need
guidance on being helpful (rather than defensive)
when talking about autism. Explain to your children Embarrassment (supporting siblings with
that they don’t have to say anything if they are not feelings)
comfortable with it, and that some things don’t require
Source: Sibs, an organization dedicated
an explanation. Some people will be rude or stare, and
it’s okay to ignore them. There will always be people
to helping the siblings of individuals with
who don’t understand, but there are things your special needs of all kinds, including autism
children can control, like their attitude and response. What it offers: Advice for parents
on helping their children deal with
embarrassment; includes information
Siblings talk about embarrassment: about overcoming the feeling of
• “It often makes me feel awkward or nervous embarrassment, finding sources of
because I feel like I have to compensate for embarrassment, and taking preventative
my brother’s lack of social skills. It can also measures
be frustrating because I always have to go
along with him and make sure he’s doing Link: [Link]
alright.”
• “He yells a lot, so when my friends hear, it’s
embarrassing. But mostly, besides the odd
looks, people are understanding.”
• “She has many outbursts and people stare a
lot, but I either tell them to mind their own
business or ignore them because it’s rude to
stare no matter what the situation.”
5
3. Out in public
6
Friends and peers
There will come a time when your children without Parents said…
autism have a collision of worlds: when their outside
• “My daughters do not want their brother’s
life (like school and friends) meets their home
autism to be the first thing they tell
life. Bringing friends into life with autism can be a
someone… but they have always judged
challenge, especially the first time someone comes
their friends, and especially boyfriends, by
over for a visit. Some children handle this transition
how they reacted to their brother.”
with ease, while some actively avoid it, even hiding the
fact that they have a sibling with autism from others. • “At the age of four, she defended him to
Sometimes kids will be afraid of being embarrassed by her peers. A couple of boys in her class
their sibling with autism and will avoid having friends made fun of him for his movements and
over altogether. If your children go to the same school, an outburst he was having over a toy he
peers and friends may ask one of your children without couldn’t take. She walked right up to them
autism, “what’s up with your brother/sister?” and said, ‘He’s just a little boy!’ No truer
words have ever been spoken. She ‘gets it’
Parents should address how to deal with peers who more than many adults do.”
ask questions, or even exhibit rude behaviors. School
can be a stressful time for children if they feel judged
for having a sibling who does “weird” things or
requires special attention. Prep them for these kinds
of conversations and help them come up with simple, For more info, check out:
efficient explanations for their peers. They shouldn’t
have to feel defensive about their sibling, but being Growing Up Together: Teens with
able to have a quick, thoughtful dialogue with a friend Autism
or classmate could make it easier for them when
people ask questions. Source: Autism Society of America
What it offers: A guide for teens with
For playdates at home, it might be a good idea to a classmate or a friend who has autism;
establish boundaries, like having your child with autism this could be a useful tool in explaining
play in another room when a sibling’s friend is over. (or getting ideas to explain) autism to
This may be easier said than done, so encourage your
teenagers that addresses ways to be a
children to be open with their friends about what to
expect. More likely than not, your children will end friend and communicate
up with kind, non-judgmental friends, who appreciate Link: [Link]
them and their brother or sister with autism.
7
4. Challenges and feelings
Negative feelings Thinking about the future
Autism comes with a host of feelings that can be As children become older and start to think about
difficult to process. Your children may deal with anger, their future, they may ask questions about where their
resentment, guilt, loss, and many other feelings. They sibling with autism fits. When the time is right, make
may not know how to cope, or may not want to talk sure to involve them in the planning process. Keeping
to you about it for fear of being a burden or sounding an open line of communication will ensure that
negative about their sibling with autism. It is important everyone feels comfortable with any plans that are set
to assure your children that it’s okay to have these in place. If circumstances lead to you being unable to
feelings. Listen to what they have to say, acknowledge care for your child with autism prematurely, the earlier
that their feelings are legitimate, and give suggestions discussions will help your children without autism deal
on how to work through things. Even if it’s something with such situations as they arise.
as harsh sounding as, “I hate my brother!” or “I wish I
didn’t have a sister,” you as a parent should be open If your child with autism will need care in the future, it’s
to these very real feelings and guide your children important that you listen to your other children’s thoughts
through them. concerning the matter. Many parents will find that their
children develop a sense of responsibility towards their
It’s important to keep an open line of communication sibling from a young age; however, some siblings might
between you and your children without autism. You not have given the matter much consideration.
may want to open up opportunities for conversation
by revealing your own struggles and feelings in ways As a parent, the best thing you can do for your
your children can understand and appreciate. Siblings children is to validate their feelings and be supportive
of children with autism often feel more comfortable of the decisions they make regarding their part in
expressing themselves if they know you’re going their brother or sister future. Perhaps one of your
through similar emotions. Also, remind your children children will feel obligated to take responsibility for
that siblings of all kinds have moments when they fight their sibling. They’re also likely to experience guilt if
or don’t get along. Encourage them to accept the they don’t feel confident in their ability or desire to do
difficulties that come with being a sibling of someone so. Whatever the decisions your children make, your
with autism, but also remind them to appreciate their guidance and reassurance will allow them to feel more
sibling’s quirks. Everyone is different, and there’s comfortable about whatever the future holds.
something to appreciate in every person. Your children
will learn that better than most.
9
5. Relationships between siblings
Growing up together
Every sibling relationship is special, but sometimes For ideas on how to promote positive
autism can make it harder for brothers and sisters sibling interactions and relationships,
to bond. While some children have no trouble check out:
developing a close relationship, others can find it
Ways to play together
difficult to overcome autism’s major sibling-related
barriers: communication, displaying affection, and Source: We Rock the Spectrum LLC (created by
finding common interests. Your children may feel My Brother Rocks the Spectrum Foundation)
rejected or distant from their sibling with autism, or What it offers: A place for kids on and off the
even guilty for not having the same closeness they see spectrum to play in a safe environment and
between siblings from other families. Some children have fun together; this is one example of an
may have genuine feelings of love for their sibling with environment for sibling interaction, but look in
autism, and yet at the same time experience a sense your community for others (e.g. autism-friendly
of loss when thinking about the brother or sister they movie showings and inclusive sports leagues)
“could have had.” or consider organizing playdates with other
autism families
Fostering a good relationship can be as easy as Link: [Link]
finding ways younger siblings can play together, or
helping older siblings find shared interests. This, Peer Play Predicament
like all relationships, will take love, patience, and
Source: Organization for Autism Research
time. Siblings may have very different interests – one
(OAR)
child might be a budding geologist, while the other
loves to run around outside. Search for overlaps: What it offers: This blog post talks about the
maybe they can go for a walk and look for cool rocks special challenges of kids with autism and
together. Parents can’t force their kids to have a playdates; the post offers insight on how to
better relationship, but it can be helpful to facilitate help kids with and without autism play together
opportunities to play together and find common Link: [Link]
interests.
How can I get my brother or sister to
respond to me?
Source: Organization for Autism Research
Siblings say they get along best (OAR)
when: What it offers: Within a full article spanning
• “We talk about a subject he is really into. I try multiple sibling topics, the section “How can
to get into the same stuff he does so we have I get my brother or sister to respond to me?”
something to talk about.” gives kids additional guidance on how to play
• “We play video games together or talk about and connect with their sibling with autism in a
his favorite things. He loves playing games way that is mutually beneficial
and talking about them, too!” Link: [Link]
• “I tickle him and jump on the trampoline with
him.”
10
Time apart
Being a sibling of someone with autism can sometimes Sibshops
feel overwhelming, so it’s important for children to Source: SiblingSupport, created by
have time and space to be their own person. Siblings Don Meyer
occasionally need to take a break from one another What it offers: Sibshops provide support and
and recharge. Beyond getting involved in a club or community for siblings, as well as a chance to
their own activities, siblings of children with autism let off steam and be a kid; siblings often make
might find it helpful to connect with others who are strong friendships with one another, can talk
going through the same things. This gives children over problems with leaders and peers, and
time and space to vent, as well as get advice on how enjoy the special time just for them
to deal some of the issues they’re experiencing. If your Time commitment: Typically once a month for
children feel like they can have time to relax and be 2-3 hours, depending on the specific program
themselves, they’re more likely to enjoy spending time
with their sibling… and get more out of it! Pricing: Varies depending on location and
facilitating person/group; memberships or
group packages are often available
There are support groups for siblings of children with
disabilities in many communities. It’s worth seeing if Find one near you: [Link]
there is one near you. You may be surprised at how
close the nearest group can be. There are also online
forums, websites, and social media pages for siblings Sibs
to safely express themselves and talk with others going Source: Sibs, an organization dedicated to
through similar things. helping the siblings of individuals with special
needs of all kinds, including autism
What it offers: There is a “doing your own
thing” section that outlines a few tips to help
younger siblings take healthy breaks from their
sibling
Note: If you find that there aren’t any suitable Link: YoungSibs: [Link]
support groups available for your children AdultSibs: [Link]
without autism to attend, think about getting
together with other families in your local
special needs community to facilitate a less SibTeen Facebook Group
formal but still meaningful support session. Source: SiblingSupport, created by Don Meyer,
From organizing a playdate for younger a Facebook group geared specifically for teens
siblings to arranging for contact details to be with siblings with disabilities
exchanged amongst teenagers, providing
What it offers: An outlet just for teens to
opportunities for your children without autism
talk about their problems, seek advice, and
to validate their feelings is likely to have a
celebrate their role as a sibling of someone
positive effect on their relationship with their
with a disability; members of the page can
brother or sister with autism.
contact each other, make general posts, and
form friendships with others in similar situations
Link: [Link]
11
6. Finding balance
Families impacted by autism know that the ride isn’t always easy or predictable. You may
experience challenges and make plenty of sacrifices, but there will also be laughs and warm
memories. Parents are completely tuned into these ups and downs, and siblings will be, too. With
your guidance and support, they will learn how to laugh, teach, learn, and grow alongside their
brother or sister with autism. They’ll also learn how to be there for you (and each other) during
times that aren’t so joyful. Siblings often develop the skills and attitude to become not only great
advocates for their brothers and sisters, but the entire special needs community.
• “He is a very patient person and very accepting of others with disabilities
or problems. He is always the one in his peer group reaching out to help
or encourage someone else.”
• “She has become a great advocate for other kids who have special needs.
She shows kindness and respect for other students in her class with
autism. She has learned to be flexible and patient.”
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What’s Next?
You can help kids in your school district learn more about autism, too! The more
they know, the better they will be able to understand your child with autism.
OAR’s “Kit for Kids” includes “What’s up with Nick?”, a story about a boy with
autism. His classmates discover that even though Nick does some things that may
seem weird at first, it wasn’t a big deal once they got to know more about him.
Video
• Lesson Plan
Poster • How-To Guide
• Online Activity Books
20 Booklets
ORGANIZATION FOR
ORGANIZATION FOR AUTISM RESEARCH
AUTISM RESEARCH
g:
utism siblin
Life as an a
Autism,
my sibling, and me
a guide
for teens
Want to order guidebooks for your family, or Kit for Kids for your classroom or school district? Call the
Organization for Autism Research at (703) 243-9710 or send an e-mail to programs@[Link].
ORGANIZATION FOR AUTISM RESEARCH
Raise money. Fund research. Change lives.
[Link]
[Link]/AutismOAR
[Link]/OrganizationforAutismResearch
(866) 366-9710
This resource is the product of the hard work and creativity put in by Lauren Laverick-Brown and Jessie Stanek, OAR Interns,
Summer 2014. Special thanks to all of the siblings, parents, autism professionals, and other community members who contributed.