“We’re all in this together.”
The Impact of Autism on Siblings
Michael J. Murray, MD
Director, Division of Autism Services
Penn State College of Medicine
The Central Pennsylvania Regional Autism Partnership
www.AutismCentralPA.org
Sibling:
1. A person’s brother or
sister
2. The people we practice
on, the people who teach
us about fairness and
cooperation and kindness
and caring - quite often
the hard way.
“typical” Siblings
• In many ways they are anything but typical:
– Tend to be wiser and more mature than their age
would suggest
– Face myriad challenges:
• Parental responsibility
• Feelings of isolation from the rest of the family and
their peers
• Confusing feelings: fear, anger, and embarrassment
about their sibling with autism
• Guilt for having these feelings
“typical” Siblings
• "He had bigger needs
than the rest of us
and you can say it
made me a better
person, but you don't
always want to be a
better person, and
that's the truth.“
– Judy Karasik
Sources of stress for siblings:
• embarrassment around peers
• jealousy regarding amount of time parents
spend with their brother/sister
• frustration over not being able to engage or
get a response from their brother/sister
• being the target of aggressive behaviors
Sources of stress for siblings:
• trying to make up for the deficits of their
brother/sister
• concern regarding their parents’ stress and
grief
• concern over their role in future caregiving
Explaining Autism to Children.
Rule of thumb: talk about it early and often.
Explaining Autism to Children.
• Information needs to be relevant to their
developmental age and understanding:
– Young children may be most concerned about
unusual behaviors that frighten or puzzle them.
– Older children may be more bothered by
interpersonal concerns such as explaining autism
to their friends.
– Adolescents may be most concerned with the long
term needs of their sibling and the role they will
play in future care.
Explaining Autism to Children.
• Children need to be told about autism again
and again as they grow up:
– Just because they can talk the talk does not mean
they can walk the walk.
– Throughout their childhoods, children will need to
hear, in increasingly mature terms, what autism is
all about.
– When in doubt, let their questions about their
brother or sister guide your discussion.
So what do we know?
You guessed it, not very much.
The Research
• Limitations
– Few longitudinal studies
– Strong cohort effects
– Wide age ranges of included sibships
– Most studies are self-report
– Findings dependent on measure used
Kaminsky and Dewey (2001)
• Compared sibling relationships of children
with autism, Down syndrome, and normally
developing children
• Sibling relationships in families with children
with autism were characterized by less
intimacy, prosocial behavior, and nurturance
• But also reported greater admiration of their
sibling, less quarreling with their sibling, and
greater empathy overall
Macks and Reeve (2007)
• Compared psychosocial and emotional
adjustment of siblings of children with autism
and siblings of non-disabled children
• Having a sibling with autism enhanced
psychosocial and emotional adjustment when
demographic risks are limited
• Having a sibling with autism was detrimental
to growth and development as demographic
risks increased
Macks and Reeve (2007)
• Siblings of children with autism are likely to
have:
– More positive self-concept
– More positive view of their intelligence and
behavior
– Greater levels of maturity
– Better problem solving skills
Infancy
• At 4 months of age, no difference in social
engagement
• At 14 months of age, demonstrate delayed
requesting behaviors but greater
responsiveness to their name being called
• At 18 months of age, fewer play related
gestures
– (Yrimaya 2006)
Childhood
• Spend a great deal of time together (on
average, 40 minutes out of every hour) when
at home
• Their brothers and sisters with autism respond
less positively to them
• Despite this, majority report primarily positive
feelings about their relationship
– (Rivers and Stoneman 2003)
Adolescence
• Begin to spend less time with their brother or
sister with autism
• Feelings of embarrassment become more
prominent
• Anger about aggression directed at them
• More than half are unable to explain their
brother’s or sister’s disability and a third
report only being able to talk with someone
outside of their family about their sib
Adulthood
• Have less contact with their brother or sister
with autism
• Feel pessimistic about their brother’s or
sister’s future
• Report that their relationship with their
parents has suffered
– (Orsmond and Seltzer 2007)
Possible Protective Factors
•
•
•
•
Quality of services for child with autism
Being in large family (sibships > 3 children)
Being male
Being older than child with autism by 2 or
more years
• Two parent household
• Having the opportunity to talk with other
children who have siblings with autism
• Having supportive peer group
Helping Your Children
Form a Positive Relationship
Helping Your Children
Form a Positive Relationship
• Young children can be taught simple skills that
will help them engage their brother or sister
with autism:
– Making sure they have their brother or sister’s
attention
– Giving simple instructions
– Allowing for processing and giving expectant cues
– Commenting on their appropriate behaviors
– Praising good play and other personal strengths
“Why won’t he play with me?”
Find common ground.
• Make sure the child understands any
limitations his brother or sister with autism
may have.
• Provide specific suggestions of how they can
play together.
• Encourage shared interests.
• Help the child understand that play might be
highly repetitive and may be different from
what they are used to.
“It’s not fair.”
Create special time.
• Every child in a family needs time to be special
• These times should be regular and separate
from the child with autism.
• Not necessary, and probably not possible, for
each child in a family to receive the same
amount of attention.
• Strive for equity.
“I’m scared.”
Find a safe haven.
• Have a plan of how behavior issues are to be
handled in the home and in the community.
• Physically separate siblings when behaviors
are escalating.
• Help children understand triggers for their
brother or sister with autism.
• Have signals that everyone in the family
understands for “take a break”.
“He’s so embarrassing.”
Encourage honesty…and laugh.
• Acknowledge that some of the behaviors of
the child with autism are strange.
• Encourage a sense of humor.
• Encourage assertiveness with peers.
• Allow emotional venting.
“I feel like the parent.”
Let sibs be children too.
• Limit the sense of responsibility for their
brother or sister with autism.
• Help define appropriate expectations for
them.
• Discourage their commonly held belief of
“having to make up” for their brother or
sister’s limitations.
“He ruins everything.”
Ask for help.
• Have other family members and other adults
help with holiday plans, vacations, birthdays,
etc. so that the other children can enjoy them.
• Maintain special times as challenging as that
might be.
• Important for parents to model appropriate
coping techniques.
“What’s going to happen when my
parents aren’t here?”
Adult Siblings
• Questions may focus on their own plans to
have children (concerns whether there is a
genetic component to their sibling’s autism)
• May feel a sense of responsibility for their
brother or sister with autism
– May make it difficult for them to leave home and
begin independent lives
Adult Siblings
• Parents need to discuss with their older teen aged
children expectations they have in caring for the
family member with autism
– Important to begin this discussion early as the concerns
will grow as the parents age
– Need to discuss living arrangements for the adult child
with autism
– Discuss who will have guardianship for the person with
autism
• Reassure them about the legitimacy of their
assuming their own roles as adults
So what do we need to do?
20 things sibs want parents and
providers to know:
• 1. The Right to One’s Own Life.
• 2. Acknowledge siblings’ concerns.
• 3. Expectations for typically-developing
siblings need to be reasonable.
• 4. Expect typical behavior from typicallydeveloping siblings.
• 5. Expectations for the family member with
autism need to be established.
20 things sibs want parents and
providers to know:
• 6. The Right to a Safe Environment.
• 7. Opportunities to meet peers are important.
• 8. Opportunities to obtain information is
critical.
• 9. Acknowledge sibs’ concerns about the
future.
• 10. Include both sons and daughters in
discussions about the future care of the family
member with autism.
20 things sibs want parents and
providers to know:
• 11. Communication.
• 12. One-on-One time with parents needs to
be valued.
• 13. Celebrate every child’s achievements and
milestones.
• 14. Include siblings in the definition of
“family”.
• 15. Parents’ perspective is more important
than the disability.
20 things sibs want parents and
providers to know:
• 16. Actively reach out to brothers and sisters.
• 17. Learn more about life as a sibling.
• 18. Create local programs specifically for
brothers and sisters.
• 19. Include brothers and sisters on advisory
boards and in policies regarding families.
• 20. Fund services for brothers and sisters.
www.siblingsupport.org/
Resources
Capitol Region
UCP Central PA Sibshop
UCP Central PA
44 South 38th Street
Camp Hill, PA 17011
Phone: 717-975-9611
http://www.ucpcentralpa.org
Sibshop Description: Our program is
for children ages 6-12 who have a
sibling with a disability. Our program is
held in both the spring and the fall
with a total of 8 meetings per year.
Resources
Lancaster County
The Arc of Lancaster County Sibshoop
The Arc of Lancaster County
630 Janet Avenue
Lancaster , PA 17601
Phone: 717-395-5251
http://www.thearcoflancasterco.org
The Perfect book for young siblings and as a guide for helping preschool
and kindergarten-aged students better understand their peers with
autism
Moving to a new neighborhood is
difficult, but Adam Krasner has the
additional burden of dealing with
Jeremy, his neurologically-impaired
brother, who can’t seem to do
anything right. And Don’t Bring
Jeremy, nominated for six state
children’s book awards, is the
heartwarming story of two brothers,
friendship, and acceptance.
"Living with a Brother or Sister with
Special Needs" focuses on the
intensity of emotions that brothers
and sisters experience when they have
a sibling with special needs, and the
hard questions they ask: What caused
my sibling's disability? Could my own
child have a disability as well? What
will happen to my brother or sister if
my parents die? Written for young
readers, the book discusses specific
disabilities in easy to understand
terms. It talks about the good and notso-good parts of having a brother or
sister who has special needs, and
offers suggestions for how to make life
easier for everyone in the family.
Formatted like the slam books passed
around in many junior high and high
schools, this one poses a series of 50
personal questions along the lines of:
What should we know about you?
What do you tell your friends about
your sib's disability? What's the
weirdest question you have ever been
asked about your sib? If you could
change one thing about your sib (or
your sib's disability) what would it be?
What annoys you most about how
people treat your sib? THE SIBLING
SLAM BOOK doesn't slam in the
traditional sense of the word. The tone
and point-of-view of the answers are
all over the map. Some answers are
assuredly positive, a few are strikingly
negative, but most reflect the complex
and conflicted mix of emotions that
come with the territory.
This groundbreaking work was
excerpted in The New York Times for
its ability to honestly, eloquently, and
respectfully set forth what life is like
with autism in the family. What sets
The Ride Together apart is its
combination of imagination and
realism -- its vision of a family's inner
world -- with David at the center.
http://astore.amazon.com/thesibsuppro-20
Keep your fingers
crossed…
We are waiting to hear about funding
for a social skills project that would
use assistive technology to facilitate
social interactions between children
with autism and expressive language
deficits and their siblings and typically
developing peers.
We should be hearing very soon if we
will receive funding and are hoping to
recruit participants.
More information will be made
available if we obtain funding at:
www.AutismCentralPA.org
"We will become
caregivers for our
siblings when our
parents no longer can.
Anyone interested in
the welfare of people
with disabilities ought
to be interested in us."