AUTISM AND SIBLINGS FOSTERING A POSITIVE COMMUNICATION

“My own experiences living in different countries and often feeling frustrated with
language and social barrier, it made me very interested on how people communicate and
interact. Considering all the experiences that make each individual unique, I am very inter-
ested into studying the human relationships and finding ways to turn communication into
meaningful experiences”.
“My own experiences living in different countries and often feeling frustrated with
language and social barrier, it made me very interested on how people communicate and
interact. Considering all the experiences that make each individual unique, I am very inter-
ested into studying the human relationships and finding ways to turn communication into
meaningful experiences”.

M I S S I O N S TAT E M E N T

To improve the communication and understanding between siblings and

their sisters and brothers with autism as well as with their parents. Also, bring
attention to the lack of parental as well as public awareness to the needs of
the typical siblings.
W HY YOUN G S I B L I N GS ??????

1 In an early age is very hard for them to understand their autistic brothers and sisters and why their parents treats them
differently. As a consequence, they often feel resentment, anger, and frustration towards their autistic siblings and parents.
W HY YOUN G S I B L I N GS ??????

1 In an early age is very hard for them to understand their autistic brothers and sisters and why their parents treats them
differently. As a consequence, they often feel resentment, anger, and frustration towards their autistic siblings and parents.

2 Siblings are the longest caregivers and the groundwork for connec tion is laid down in early childhood.
W HY YOUN G S I B L I N GS ??????

1 In an early age is very hard for them to understand their autistic brothers and sisters and why their parents treats them
differently. As a consequence, they often feel resentment, anger, and frustration towards their autistic siblings and parents.

2 Siblings are the longest caregivers and the groundwork for connec tion is laid down in early childhood.

3 Autism affects 1 in 100 children and their families and it is the fastest growing developmental disorder in the United
States. The same attention has not been given to their families, especially their siblings.
W HY YOUN G S I B L I N GS ??????

1 In an early age is very hard for them to understand their autistic brothers and sisters and why their parents treats them
differently. As a consequence, they often feel resentment, anger, and frustration towards their autistic siblings and parents.

2 Siblings are the longest caregivers and the groundwork for connec tion is laid down in early childhood.

3
Autism affects 1 in 100 children and their families and it is the fastest growing developmental disorder in the United States.
The same attention has not been given to their families, especially their siblings.

4 It is harder to be the sibling of a child with autism than of a child with another disability.
W HY YOUN G S I B L I N GS ??????

1 In an early age is very hard for them to understand their autistic brothers and sisters and why their parents treats them
differently. As a consequence, they often feel resentment, anger, and frustration towards their autistic siblings and parents.

2 Siblings are the longest caregivers and the groundwork for connec tion is laid down in early childhood.

3
Autism affects 1 in 100 children and their families and it is the fastest growing developmental disorder in the United States.
The same attention has not been given to their families, especially their siblings.

4 It is harder to be the sibling of a child with autism than of a child with another disability.

5 Silence can affect on their capacity as adults for intimacy and form a barrier to relationship with other people
W HY YOUN G S I B L I N GS ??????

1 In an early age is very hard for them to understand their autistic brothers and sisters and why their parents treats them
differently. As a consequence, they often feel resentment, anger, and frustration towards their autistic siblings and parents.

2 Siblings are the longest caregivers and the groundwork for connec tion is laid down in early childhood.

3
Autism affects 1 in 100 children and their families and it is the fastest growing developmental disorder in the United States.
The same attention has not been given to their families, especially their siblings.

4 It is harder to be the sibling of a child with autism than of a child with another disability.

5 Silence can affect on their capacity as adults for intimacy and form a barrier to relationship with other people

ON T HE B R I GHT S I DE ......

Kids who grow up with autistic sibling are

Patient and Tolerant

Compassionate
Many go into human service profession
SUPPORT PROGRAM for young A co-written book between a younger sister and her A program intended to C O N N E C T brothers and
siblings of people who have special mental autistic brother’s therapist about her U N I Q U E sisters of children with special needs through
and health needs. EXPERIENCES LIVING with her autistic brother and SIBLING GROUPS and continuous R E S E A R C H to
U N D E R S TA N D I N G his special needs. learn more about sib experiences so professionals
can D E V E L O P BET TER SERVICES to meet their needs.
LO C A L ORG A NIZ AT ION: G RO DE N C E N TE R

The Groden Center, Inc. is a school and residential treatment

center in Rhode Island. It provides early autism interven-
tion services, an early childhood education program, and
functional and social development instruction to school-age
children with learning disabilities.

The Groden Network have worked with major Rhode Island

universities. The staff have published books and
resource materials used by professionals worldwide in
autism work.

Ayelet Kantor, Ph.D.

Research Associate

86 Mount Hope Avenue

Providence, RI 02906
“ After many years of listening to many different siblings, I have come to know that siblings
adapt best to their brothers or sisters' illness or disability when they have information,
support from their families, and the opportunity to talk with other children who have had
similar experiences”.
BR A INS TORMING
NEEDS - PROBLEMS - ISSUES

Children with Autism Parents Typical Developing Children

OPPORTUNITIES FOR IMPROVEMENT

Objective

Uncompromising

Indifferent

Details

Sensory Issues

Fixated Mind

Consistency

Communication

Social Interaction

Failing = Dismotivation = Low Self esteem

Objective Depression

Uncompromising Divorce

Indifferent Burden

Details Sharing

Sensory Issues Fairness

Fixated Mind Knowledge

Consistency Stress

Communication Responsibility

Social Interaction Quality Time = Demands

Failing = Dismotivation = Low Self esteem

Objective Depression Knowledge

Uncompromising Divorce Isolation

Indifferent Burden Guilt

Details Sharing Anger

Sensory Issues Fairness Embarrassment

Fixated Mind Knowledge Frustration

Consistency Stress Silence

Communication Responsibility High Expectation

Social Interaction Quality Time = Demands Early Maturity

Failing = Dismotivation = Low Self esteem Compassion

Nurturing

Future

Parental Responsibility
Objective Depression Knowledge

Uncompromising Divorce Isolation

Indifferent Burden Guilt

Details Sharing Anger

Sensory Issues Fairness Embarrassment

Fixated Mind Knowledge Frustration

Consistency Stress Silence

Communication Responsibility High Expectation

Social Interaction Quality Time = Demands Early Maturity

Failing = Dismotivation = Low Self esteem Compassion

Nurturing

Future

Parental Responsibility

EDUCATION

UNDERSTANDING EMPATHY AWARENESS

 EDUCATION

UNDERSTANDING EMPATHY AWARENESS

GLASBERG STUDY

Interview 63 siblings of children with autism or a related disorder

Five and Six years old Seven - Ten years old Eleven - Seventeen years old

Half never heard word “autism” Fifth never heard word “autism” One never heard word “autism”

2/3 thought Autism could be 1/2 thought Autism could be Aware that Autism could not
contagious contagious be caught

Knowledge based on has been Knowledge based on has been Knowledge based on has been
heard or seen and observable heard or seen and observable heard or seen and observable
symptom symptom symptom

Parents Overestimated their child’s understanding of autism

 EDUCATION

UNDERSTANDING EMPATHY AWARENESS

GLASBERG STUDY

Interview 63 siblings of children with autism or a related disorder

Five and Six years old Seven - Ten years old Eleven - Seventeen years old

Half never heard word “autism” Fifth never heard word “autism” One never heard word “autism”

2/3 thought Autism could be 1/2 thought Autism could be Aware that Autism could not
contagious contagious be caught

Knowledge based on has been Knowledge based on has been Knowledge based on has been
heard or seen and observable heard or seen and observable heard or seen and observable
symptom symptom symptom

Parents Overestimated their child’s understanding of autism

IN T ERV IE W

Parents unknowingly put a lot of pressure on their typical child in order to compensate for the
autistic kid

They show concerns that their typical children imitate their sibling with autism because they feel
their brothers and sisters reveive more attention and often rewarded when they display these
behaviors

Parents are overly optmisitic about their typical children emotional health. They tend to see their
children experiences more positive than actually are.
CO N CEP T S

C ONC EP T 1 OUR OW N WO R LD C ONC EP T 2 POS IT IVE FI GHT

Precedents: My Own World Photography Project “Deborah, 9, grumbled about being tired all the time, because her 7-year-old autistic sister was often awake and noisy through
the night. Deborah also said she wished she could argue with her sibling. ‘’I’m the only one in the whole fourth grade who isn’t
allowed to have a fight,’’ she said”.

Typical developing child

Manifest anger and frustration
Knowing that his/her needs are listened

Typical developing child

Opportunity to have fun with their siblings

Create a sense of inclusion

Parents and Autistic

Child

Maintaining a positive environment

Building new skills that can be appreciate
by others

Parents and Autistic

Child
- Creating a quality time that incorporate all
members of the family
- Building new skills that can be appreciate
by others

C ONC EP T 3 S I BLI N G = M ENTO R

C ONC EP T 4 DES I GN YOUR OW N SOLUT I ON
“ Jeffrey told his parents, Lisa and Craig Parles, that he wanted to play Uno, a card game that relies on matching colors and num-
bers, with Andrew, his autistic brother. So the boys’ parents asked for help from Andrew’s teachers, who guided Jeffrey through Kiran Bir’s Riverside School Project : Aware -- Enable -- Empower
the first lesson one day recently.
Precedents: “ Autism Through a Sister’s Eyes”

Andrew, who barely speaks, was not at his best that day. But Jeffrey was determined and well versed in the basic techniques of
behavior management. When Andrew’s attention wandered, Jeffrey tapped his shoulder. With simple one-step instructions, the Sibling: “What is my problem with that”

younger boy explained how to match cards”

Target: 5th to 8th grade
Why: - Sense of own identity
- Insightful answers
- Interest on self exploring
Questionnaires

Typical developing child

PARENTS OR THERAPISTS:
Translate the behavior of the chid with
Opportunity to have fun with their siblings autism
Joy of teaching
Learning behavior management

1. Take into consideration the individual

Parents and Autistic unique experiences
Child
2. Acquire knowledge to make the own
Creating a quality time that incorporate all decisions
members of the family 3. Empower the children to change/ solve
Building new skills that can be appreciate the problem.
by others

Typical developing child Parents, Therapists,

Autistic Child
Manifest anger, frustration, and fear
A tool to access needs
Understand the autistic sibling disorder
Discover areas of improvement
Change the current problem by coming up
with own solutions.
• DESIGN YOU OWN SOLUTION
• DESIGN YOU OWN SOLUTION

SIBLING’S FRUSTRATIONS
REDIRECTING PARENT’S AT TENTION
• Why Concept Four ????

1 Relying on the autistic children cooperation can turn the focus on them and not on their siblings which is not
the purpose of the project.

2 Relying on the autistic children can slow down the process, hence, affect the parents and typical children initial
interest on the project.

3 Siblings might not be interested because they have already build up frustration towards their autistic siblings.

AUTISTIC
SIBLING

PARENTS
• Why Concept Four ????

1 Relying on the autistic children cooperation can turn the focus on them and not on their siblings which is not
the purpose of the project.

2 Relying on the autistic children can slow down the process, hence, affect the parents and typical children initial
interest on the project.

3 Siblings might not be interested because they have already build up frustration towards their autistic siblings.

FE AS I B I L I T Y

AUTISTIC PARENTS
SIBLING

Getting first the attention of the typical child PO R TABLE and accessible product.
by FO CUS I N G ON T HE I R N EE DS Contrary to Sibshops or SibLink it
would go to people’s houses.
• Needs. Problems. Issues

Rigid Knowledge? Guilt

Sharing
Indifferent Anger Embarrassment
Knowledge ?
Communication Frustration Silence
Responsibility
Social Impairment Compassion Future

Open Environment = Conversation Conversation = Venting Frustration Conversation = Education

Education = Understanding Education = Empathy Education = Awareness

• INSPIR ATIONS

Kiran Bir’s Riverside School Project : Aware -- Enable -- Empower

Autism Through a Sister’s Eyes: Focus on one’s unique experiences

• SYSTEM DESIGN

AUT I S M AN D S I B L I N G S H OW AUT I S M A FFEC T T H E OT H E R C H I L D

AUT I S M AN D S I B L I N GS H OW AUT I S M AFFEC T S T H E OT H E R C H I L D

w w w.r e d i r e c t .c o m

Tool Kit Advertising Installation

Tool Kit

AUT I S M AN D S I BLI N GS H OW AUT I S M AFFEC T T HE OT HE R C H I LD

Tool Kit

AUT I S M AN D S I BLI N GS H OW AUT I S M AFFEC T T HE OT HE R C H I LD

TA R G E T G R O U P : 5th to 6th grade

W H Y: stronger sense of own identity

Insightful answers
Interest on Self Exploring Questionnaires
Tool Kit

AUT I S M AN D S I BLI N GS H OW AUT I S M AFFEC T T HE OT HE R C H I LD

TA R G E T G R O U P : 5th to 6th grade

CONSIDER each unique experiences
W H Y: stronger sense of own identity AC Q U I R E knowledge to make the own decisions
Insightful answers EMPOWER the children to change / solve problem
Interest on Self Exploring Questionnaires
• How It Works
AUT I S M AN D S I BLI N GS H OW AUT I S M AFFEC T THE OTHE R C H I LD
F R O N T PA R T BAC K PA R T

AUT I S M AN D S I BLI N GS FOSTE R I N G A POS IT I VE C O M M UN I CAT I ON

 TH
ISI
S W
H ATI
LO
O K
LIK
E

MY DREAMS MY SOLUTION M Y PA R E N T S MY SIBLING M Y FA M I LY THIS IS ME

 THIS IS ME
I am very good at I am very proud of
Things you will never guess Food I like
about me

M Y FA M I LY
MY SIBLING
M Y PA R E N T S
Food I don’t like

Once I won

MY SOLUTION
I think I would be good at

MY DREAMS
 THIS IS ME
Five thin If you want me to like you,
ol gs I wis
cho h I could follow these rules:
oa fter s do after
I like to d school
ings

M Y FA M I LY
th RU L E #1
Five

RU L E #2

MY SIBLING
RU L E #3

M Y PA R E N T S
RU L E #4

MY SOLUTION
RU L E #5

MY DREAMS
 I LY
M
Y FA

M Y FA M I LY
M
S IS
THI

MY SIBLING
M Y PA R E N T S
MY SOLUTION
In my family there are ___________
adults. Their names are__________
__________________________________
and I have _______ sibling (s). Their

MY DREAMS
names are _______________________
 M Y FA M I LY
MY SIBLING
Things I like to do Things
I wish

M Y PA R E N T S
with
my family I would do
with my fam
ily

MY SOLUTION
MY DREAMS
I have a sibling with special needs.
G
His/ Her name is _________________
L IN
and he/she is ___________ years old.
SI B
Y
His/ Her special needs are:
ISM
S
THI

MY SIBLING
M Y PA R E N T S
MY SOLUTION
MY DREAMS
The things I learned because of my sibling These are the things that I feel about my sibling

1. I like when............

2.

MY SIBLING
I don’t like when............

3.

M Y PA R E N T S
I am frustrated when.........

4.

MY SOLUTION
5.
I get annoyed when............

MY DREAMS
 TH
EGR
OW
N-U
P
S

MY DREAMS MY SOLUTION M Y PA R E N T S
Things I want them to DO MORE These are the things that I feel about my G R OW N - U P S

1. I like when............

2.
3. I don’t like when............

Things I want them to

M Y PA R E N T S
DO LESS

1.
I am frustrated when.........

2.

MY SOLUTION
3.
I get annoyed when............

MY DREAMS
My wish list
When I have
( Everyone has things that wish to change in their family.
problems I
What is yours? )
go to:

I wish my sibling would ...

1. 2. 3.

When I am

1. 2. 3.
sad I like to:

1. 2. 3.
I wish my parents would ...

MY SOLUTION
When I am
happy I like to:

1. 2. 3. 1. 2. 3.

MY DREAMS
I usually solve
my problems
by: How could your

1. 2. 3. relationship with
your sibling be
improved:

When I need 1. 2. 3.
to talk to
someone I
go to:
1. 2. 3.
How could your
relationship with
your parents be

MY SOLUTION
1.
When I have
questions
improved:
2. 3.
about my
sibling I go to:
1. 2. 3.

MY DREAMS
Step 1: My problem is:
Step 3:
Think about one main problem you wish Think abut three ways to get there.
you could solve and write on the post it
____________

Step2: Step4:
Think about things that can make you feel better
when you think about this problem: Pick the best one and share with My Solution is:
your parents:

MY SOLUTION
____________

MY DREAMS
 URE
E FUT
I N TH
E
S IS M
THI

MY DREAMS
 Plan your perfect day Who will you be with ?

What I would do ?
I will work in
What I would not do ?

I will live with

My plan for the Future

I will travel to Morning Afternoon Night

My pets will be

MY DREAMS
 The things I learned because of my sibling

1.
2.
3.
4.
5.
6.
7.

NAOM I ’ S A N S W ER NAOM I ’ S MO T H ER A N SW ER
• Why drawings?

LY G
M I L IN
FA SIB
Y Y
ISM ISM
S S
THI T HI

1. Emotion. Drawing has been repeatedly linked to the expression of personality and emotion.
• Why drawings?

LY G
M I L IN
FA S IB
Y Y
I SM I SM
S S
THI T HI

1. Emotion. Drawing has been repeatedly linked to the expression of personality and emotion.

2. Visual Expression . It allows children to express themselves in ways that language cannot
• Why drawings?

LY G
M I L IN
FA S IB
Y Y
I SM I SM
S S
THI T HI

1. Emotion. Drawing has been repeatedly linked to the expression of personality and emotion.

2. Visual Expression. It allows children to express themselves in ways that language cannot

3. Field Methodology. It is commonly used in art therapy, psychology, and education.

 • How to engage professionals?

P R O F E S S I O N A L’ S G U I D E can be available free online Well-known organization can P U B L I S H and S P O N S O R The project can presented in C O N F E R E N C E S
for therapists and psychologist. It tells about the the tool kit and therapist would be more encouraged sponsored by big associations such as
program using professional vocabulary in order to hand it out to parents. The National Autistic Society.
to legitimize the program as part of the therapy.
Advertising

AUT I S M AN D S I B L I N GS H OW AUT I S M AFFEC T S T H E OT H E R C H I L D

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AUT I S M AN D S I B L I N GS H OW AUT I S M AFFEC T S T H E OT H E R C H I L D

AUT I S M AN D S I B L I N GS H OW AUT I S M AFFEC T S T H E OT H E R C H I L D
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Advertising

AUT I S M AN D S I B L I N GS H OW AUT I S M AFFEC T S T H E OT H E R C H I L D

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AUT I S M AN D S I B L I N GS H OW AUT I S M AFFEC T S T H E OT H E R C H I L D

AUT I S M AN D S I B L I N GS H OW AUT I S M AFFEC T S T H E OT H E R C H I L D
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1 Spark. Parent often just don’t realize how autism can affect their typical child
Advertising

AUT I S M AN D S I B L I N GS H OW AUT I S M AFFEC T S T H E OT H E R C H I L D

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AUT I S M AN D S I B L I N GS H OW AUT I S M AFFEC T S T H E OT H E R C H I L D

AUT I S M AN D S I B L I N GS H OW AUT I S M AFFEC T S T H E OT H E R C H I L D
w w w.r e d i r e c t .c o m
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1 Spark. Parent often just don’t realize how autism can affect their typical child

2 Keeping Positive. Approaching the problem with positive image can be more effective on engaging people
Advertising

AUT I S M AN D S I B L I N GS H OW AUT I S M AFFEC T S T H E OT H E R C H I L D

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AUT I S M AN D S I B L I N GS H OW AUT I S M AFFEC T S T H E OT H E R C H I L D

AUT I S M AN D S I B L I N GS H OW AUT I S M AFFEC T S T H E OT H E R C H I L D
w w w.r e d i r e c t .c o m
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1 Spark. Parent often just don’t realize how autism can affect their typical child

2 Keeping Positive. Approaching the problem with positive image can be more effective on engaging people

3 Star t conversation. Starting point to public awareness

Installation

Par tnership with Boston Children Museum

Installation
1. Building Relationships with other kids
2. Learning While having fun
Useful Source of Information. Sibling can leave their questionnaires and share them with other siblings.
Siblings can get inspired by some of the solution from other siblings
Parents can meet other parents that are going thorough similar situation
Easy access to therapists or anyone interest on the issue
1. EDUCATING
2. UNDERSTANDING
3. SHARING