education

1. Family Systems Theory Overview
, Support and Empowerment for
Families: TIES Curriculum
Working with Families of Students with
Autism Spectrum Disorders
SPED 605

2. Framing Questions
Why do some families grow stronger as a
result of their experiences raising their
children with a disability and other families
do not and even become more vulnerable?
On what basis can educators begin to
individualize their responses to families?
How do cultural and linguistic diversity
affect family priorities?

3. What is “Family Systems
Perspective”
• Perspective is simple and essential to your
understanding of how to partner with families:
– Whatever happens to one member of the family
happens to all (metaphor)
• This framework includes:
– Family characteristics
• How they interact with one another
– Family functions
• The functions they perform for each other
– Family life cycle
• How they move through various stages of their lives

4. Family Characteristics (inputs)
• Characteristics of family as a whole
– Size and form
– Cultural background
– Socioeconomic status
– Geographic location
• Individual characteristics
– Exceptionality
– Coping styles
• Special challenges
– Homelessness
– Parent with disability
– Teenage parents

5. Family Interactions
• How family members’ interactions within the
family and their relationships to each other impact
our ability to develop partnerships with them
(whole-family approach)
– Family systems theory provides a framework for
understanding what a family is and how it functions
• Four basic types of interactions or relationships
– Marital
– Parental
– Sibling
– Extended family

6. Input/Output
• The first assumption of the systems theory
focuses primarily on “what happens to the
input as it is processed by the system on its
way to becoming an output
• Inputs come into the family, the family
interacts with and responds to the inputs.
Family interaction occurs as families perform
roles and interact with each other. As a result,
the family creates specific outputs in carrying
out and related to their family functions

7. Wholeness and Subsystems
• The second assumption of systems theory is that
the system must be understood as a whole and
cannot be understood by only one or more of its
parts or members
– Understanding the child ≠ understand family
– Understanding the family is necessary to
understanding the child
– False assumption, if know mother and child’s
perspective, can establish trusting partnership
• Mistake-family consists of the sum of its members’
interactions with each other

8. Boundaries
• Third and last assumption of systems theory:
– Boundaries exist between family subsystems, resulting from
the interaction of family members with each other and from
the family unit as a whole in its interactions with outside
influences
• Families vary in which their boundaries are open or
closed to nonmembers
– effects collaboration
• Boundaries also define its members roles between two
subsystems (extended family and parental)
– Openassist with parenting, suggestions
– Closedresistance to making suggestions

9. Family Interactions
• Marital subsystem
– Strategies for enhancing marital interactions p. 32
• Parental subsystem
– Various types of parents, fathers-creating respectful
environments and trusting partnerships p. 35 & 37
• Sibling subsystem
– Sibshops p. 41
• Extended family subsystem
– Enhancing extended family interactions p. 43

10. Cohesion and Adaptability
• Two elements of interaction (Influenced highly by family
values and cultural background-self awareness on pg. 46)
– Cohesion
• Refers to family members’ close emotional bonding with each
other and to the level of independence they feel within the
family system
• Exists across a continuum with high disengagement on one end
and high enmeshment on the other
– Adaptability
• Refers to the family’s ability to change in response to situational
and developmental stress

11. Family Functions
• The tasks that families perform to meet the individual
and collective needs of their members are referred to as
family functions--ouputs
– Eight categories:
• Because family is an interacting system it is impossible
to consider family functions (outputs) without taking
the other portions of the family systems framework into
account
• Each family function is distinct, yet they usually affect
other functions (economic-recreation) and each family
function is affected by every family member
– May be positive or negative (erroneously assume child with
disability has a negative impact)

12. Family Function Reminders:
• Cultures influence the way families carry
out functions
• Families may or may not spend the same
amount of time on each function that you
assume you would spend if you were in
their situation
• Child with exceptionality and other family
members influence how the family performs
each of these eight functions

13. Family Function Reminders:
• Child with exceptionalities impact can be both
positive and negative and will depend in part on:
– Family’s characteristics, life cycle stages, and
transitions
• Family member’s motivation, knowledge, and skills
will influence how they carry out their functions and
how you can most successfully develop a trusting
relationship with them
• Time is a valuable and limited resource for families

14. Family Life Cycle
• Seeks to explain how a family changes over
time
– Six identified stages
• Transitions are the periods between stages
when the family is adjusting its interactions
and roles to prepare for the next
developmental stage
• On cycle vs. off cycle changes/transitions

15. Starting at the Beginning…

16. What does this information mean
for families?
• Listen to and validate their concerns
• Refer early to an ASD specialist
• Monitor siblings repeatedly over first two
years of life
• Child’s development may progressively
“worsen”, we need to know how to help
parents understand and support them
through this time
• What is our role for supporting families
when receiving a diagnosis?

17. Manner of the Professional
(Brogan and Knussen, 2003)
• Sympathetic
• Understanding of the parent’s concern
• Good communicator
• Direct (not evasive)
• Provided a large amount of information (even
too much)
• Approachable and open to questions

18. Additional Suggestions
• Be responsive to caregiver questions,
concerns
• Be honest about what you do and do not
know
• Provide information both verbally and in
writing
• Means for follow up questions

19. FOLLOW UP WITH FAMILIES

20. “Bad Day at School”
• The first time concerns are brought to your
attention
• http://www.nbc.com/parenthood/video/bad-day-
at-school/1205957/

21. Sharing of Information
• Involve both parents if possible so that
‘mom’ is not in the middle, conveying
information and trying to persuade
• Mother to Father
– “Please don’t make me be alone with this”
• http://www.nbc.com/parenthood/video/pilot
/1205946/

22. A Fathers’ Perspective

23. Frankie’s Dad-receiving and
living with a dx

24. Troy’s Dad: Receiving the dx

25. Families
Specific impact on Parents of
Children with Autism
• Scarcity of professionals trained
• Sometimes difficult to develop initial social bond
• Extensive behaviors, no physical features
• So many unknowns
– Unknown etiology, unspecific diagnosis, difficult to dx
early, prognosis difficult to predict, future
• “Miracle cures”
• Intensive time crunch-
”I feel my child slipping away”

26. “The beginning is the most important part of any
work, especially in the case of a young and
tender thing; for that is the time at which the
character is being formed and the desired
impression more readily taken”
--Plato (The Republic)

27. Kay’s Top 10 Tips for after
receiving a diagnosis
1. Seek a speech-language pathologist who has experience with
ASDs
2. Enroll your child in a behavioral intervention program
3. Connect with your local Infants and Toddlers program or
school district
4. Determine if there is a center/program which specializes in
autism spectrum disorder , call and get on waitlists for
intervention
5. Contact local Autism Society of America Chapter
6. Connect with other parents who have a child with an ASD
7. Put down any book that does not lift you up and give you
hope to keep moving forward

28. Kay’s Top 10 Tips for after
receiving a diagnosis
8. Visit Autism Speaks and Autism Society of America
websites for information, but
9. Limit internet access
10. Fight off feelings of being overwhelmed:
1. Take a deep breadth
2. Make a goal of one thing to accomplish or learn about each
day/week
3. Know that every step forward is paving the way for your child
4. Trust that your child will make progress and you will find the
right programs
5. Remember there is no “quick fix”, unyielding love for your
child, time, dedication, persistence and intensive behavioral
interventions are the key ingredients
6. Take it easy on yourself, this experience is an ongoing process
filled with lows and highs…but always take time to celebrate
even the smallest of victories (golden nuggets)

29. Impact of an ASD diagnosis on
the family

30. Impact on Families
• Being a parent of a child with autism can be
more stressful than parenting a child with a
chronic illness or developmental disability
• Additional, possible challenging behaviors:
– Child’s high anxiety, mood swings, difficulty
making transitions, uneven intellectual profile,
echolalia, aggressive behaviors, absence of
speech
• Long term care
Pow (Rapin, 1997; Tunali & Poweerr,, 22000022;; SSppoouunnddeerrss,, DDeePPaauull,, FFrreeeemmaann,, && LLeevvyy,, 22000022))

31. Impact on Families
• Feelings of loss because they and their children cannot
lead a “normal life”
• Family experiences only fleeting moments of feeling like
a family
• Life revolves around dealing with child’s autism and
unusual behaviors
• Affects family so intensely, require strong coping skills
and formal/informal support (Werner, 2001)
• Cost
– Difficulty maintaining employment
– Difficulty finding or paying for adequate child care and therapies
– Lost leisure time opportunities
– Less time available for other children in family

32. Greatest Stressor…preparing for
the future

33. Sources of Stress
• Care-taking demands
– Parental concerns about interacting with
professionals and difficulty obtaining services
– Overwhelming amount of behavioral
interventions and “alternative treatments”
– Time and energy need to identify interventions,
provide for siblings, etc.
– Interactions and explanations to extended
family

34. Defining Roles

35. Extended Family
• Dad telling dad
• http://www.nbc.com/parenthood/video/pilot
/1205946/
– Pilot 43:55-45:23

36. Receiving a Diagnosis •Where do you go
next?
•Parent’s feel it is
all their
responsibility to
find the way
•No set regime of
treatment plan
•Parents feel very
unprepared and
overwhelmed
•Treadmill,
running against
time

37. Empowering Families
• How do we empower families???
The most effective way to support families is
by providing them with enough
INFORMATION to
access needed resources to make informed
decisions about their child’s treatment programs
and maintain a sense of competence.
(Dunst and Colleagues,1988, Brinker, 1992)

38. YOU->Educator, School Nurse, Occupational
Therapist, Psychologist
• What can YOU do??????
• What is YOUR role?????
• Do you have a responsibility to provide
additional information beyond initial
diagnosis, child progress????
• How do YOU build your resource closet???

39. Parents want to know about…
• Present services and educational programs
• Future services and educational programs
• Nature of child’s disability
• Experiences of other parents who have
similar needs
• Community resources
• Legal rights
Bailey et al., 1999; Scorgie, Wilgosh, & McDonald, 1999; Cooper &
Allred, 1992; Gowen, Christy, & Sparling, 1993

40. Autism TIES Parent Training
Program
Developed by Holman & Mancini
• T raining
• I information
• E mpowerment
• S upport

41. Parent Training:
Two Components
• Lecture Series
(information), Goals:
– Empower parents with
information
• Address fears, Adjustment
• Dismiss myths
– Provide parents with
pertinent information
related to a new diagnosis
of autism and related issues
– Educate parents, informed
advocates
– Informal support group
– Provide time for specific
question and answer issues
• Home Visits (training),
Goals:
– Provide 1:1 time to address
parent’s specific issues,
questions, concerns
– Find out how things are
going in the home and
(school/service)
environment
– Provide hands on
instruction in how to
implement naturalistic
teaching strategies in home
environment (e.g.,
organizing space, use of
routines, visuals in the
home)
– Generalization

42. Parent Information Topics
• Introduction:
• Sharing YOUR story
• Building your VISION for
your child
• GOLDEN NUGGETS
• Adjustment to diagnosis and
support
• Family Coping-stress,
respite, questions about a
diagnosis
• Autism 101
• Services, Therapies,
Interventions & Resources
• Medical Evaluations
• Helping Your Child
Learn:
• Recognizing and
Responding to your child’s
Communicative attempts
• Modifying your Home
Environment
• Using Visuals and PECS
• Make & Take: visuals,
schedules

43. Parent Information Topics (cont.)
• Behavior
• Introduction to Behavior
Management
• ABA Principles and
different forms of treatment
• Positive Behavioral Support
• Verbal behavior
• Questions/Discussion of
Specific Challenges and
Solutions
• Transitioning To Next
Program
• Planning Your Transition
• The IFSP/IEP Process
• Parent’s Rights and Related
Laws: Autism
Waiver/Advocacy, tax write
offs, insurance, etc.
• Specific Questions and
Answers

44. Parent Information Topics (cont.)
• Language, Social Skills,
• Motor/Sensory, Diet and
and Play
Wellness
• Language and Social
• Motor and Sensory Issues
Development
• Nutrition/Diet/Vitamin
• Facilitating
• Holistic Healing/Wellness
Communication/Incident
 Pre/Post video clips
al Teaching
• Final Meeting:
• Floor time
– Questions, Feedback about
Program
• Verbal Behavior
– Gift
– Re-visit and Sign Visions
– Golden Nugget Books

45. Golden Nugget-Troy’s Dad

46. KFFN

47. PRELIMINARY RESULTS

48. Early Achievements Parent Training
Questionnaire
Preliminary Results
• Parents of children in the treatment group reported significantly
more knowledge of autism after completing the training program, t(9)
= -2.60, p < .05.
• Parents also report significantly more knowledge of how to facilitate
their child’s development after completing the program, t(9) = -3.78, p
< .01.
• Perceptions of parents of children in treatment classroom regarding
how to serve as an advocate for their child also showed significant
increases after completing the program, t(9) = -5.24, p = .001.
• Parents of children in treatment program report increased feelings of
support, improvements in family, friend, and spousal relationships,
and improved feelings about professional and personal self, t(9) =
-1.84, ns.

50. Lessons Learned
• Food, food, food-comfortable space
• Child in class or provide childcare
• Challenge of meeting everyone’s schedule
• Importance of consistency “on calendar”
• Importance of a consistent facilitator
present at all sessions
• Invite extended family members
• Starting every meeting on a positive note
• Define your purpose clearly
• Parent input, but realize and be honest
about the reality of meeting ALL of their

51. Greatest Impact
• Developing visions, golden nuggets
• Connecting parents with parents going
through similar experiences in their lives
• Connecting “new” parents with “graduates”
• Knowing it was “good” information, but
more importantly helping families identify
what is a good fit for their child and family
• Information is POWERFUL

52. Quote From Past Early
Achievements Father
• "The program is exceptional. Perhaps the
most important aspect of the program is its
ability to teach families how to be
successful in the long term treatment of
autism. The professional staff, worked
tirelessly to educate my family about
autism and its treatment. We leave the
program with a sense of empowerment
that was not present at the start of the
program.”

53. Enduring Partnerships and
Empowerment
• Seven Principles of Partnerships (Turnbull,
Turnbull, Erwin, & Soodak, 2005)
– Communication
– Professional competence
– Respect
– Trust
– Commitment
– Equality
– advocacy

54. Enduring Partnerships and
Empowerment
• Life Cycle Transitions
– Early childhood
– Childhood
– Adolescence
– Adulthood
• Off-Time Transitions
• Sensitivity to life stages and transitions
– Parents need different types and amounts of
information throughout journey

55. Mom takes a breath…
• “feel like a loser”
• “worry never goes away”
• Doubt- “is there something we should have
or should try”
• “relax-cut yourself some slack” respite
• http://www.nbc.com/parenthood/video/acce
pting-help/1216679/

56. Activity
• Design a family training and/or support
group for your families in your
school/setting (Where will it be, who is it
for, how often will it meet, who will run it,
etc.)
• What would your goals be, how would you
present this to family
• Identify how this might be beneficial for
your family
• Identify potential barriers and brainstorm
solutions—think OUTSIDE the box

57. Next Steps: Implementation
• Develop a Parent Training or Education Group (Baltimore County
Public Schools)
– Frequency
– Location
– Participants, priorities
– Childcare/transportation
– Resources
• Hold a specific “parent orientation” for your classroom to meet each
parent and introduce them to your classroom and classroom
policies,
• Parent Mentors for new parents
– CONNECT PARENT WITH PARENTS
• Develop a community resource guide for your families to share with
them at orientation-
– Paper
– Link to class blog
– Wiki (PB Works, Wetpaint)
– Internal Website or Sharepoint

58. Local ASD Wiki Resource
• PB Works, SPED 605: Empowering and
Engaging Families
• asdresources.pbworks.com

59. Implementation Ideas, Continued
• Develop a questionnaire to give parents to complete about
their child and family and their needs/priorities
– send a f/up questionnaire
• Develop an effective and preferred method for
communicating regularly with all families
– Tape Reviews
• Brainstorm/develop any ways to empower your families:
– Resource notebook/library on autism that you keep in class and
update regularly for parents to peruse/check out
– Develop a monthly parent information night
– Facilitate the connection to other families of children with
disabilities-”Parent Network”
– Share information about/attend when possible, local disability
specific support groups