Jan Blacher, Ph'D'

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Family well-being The case for a new family
autism resource center at UC Riverside
Jan Blacher, Ph.D. Professor and Faculty
Chair Graduate School of Education University of
California, Riverside
Presentation for this Autism Conference University
of Redlands
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Overview of my topic for today

• Importance of studying families
• Family well being
• Stress, depression, coping,
• positive perceptions
• Influences on family well being
• Child challenges
• Parent resources and cognitions
• Cultural beliefs and practices
• Family isnt just Mom
• Take away points

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UCR FAMILIES PROJECT PSU/UCLA/UCR Collaborative
Family Study

• Faculty Collaborators (Current Recent)
• Bruce L. Baker, Ph.D.UCLA
• Keith Crnic, Ph.D. PSU, Arizona State
• Craig Edelbrock, PSU
• Bonnie Kraemer, Ph.D. SDSU
• Steve Lopez, Ph.D. UCLA
• Robert Rueda, Ph.D. USC
• Johanna Shapiro, Ph.D. UCI
• Laura Lee McIntyre, Ph.D. Syracuse University

• SEARCH Staff
• www.searchcenter.ucr.edu
• Erica Howell, Araksia Kaladjian, Stacy
  Lauderdale, Rhonda Welch-Scalco

Supported by NICHD HD21324,
34879-1459
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Why study families?
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Family Facts

• Parent psychological adjustment is adversely
  affected when there is a child with a disability,
  some positive impact notwithstanding.
• Persons with intellectual disability are about
  three times as likely as typically developing
  persons to have serious behavior challenges or
  psychiatric disorder.
• Family dynamics are reciprocal over time
  children influence parents and parents influence
  children.

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How do researchers assess parents well-being?

• Negative aspects of well-being
• Parenting stress
• Depression
• Positive aspects of well-being
• Coping
• Positive perceptions

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Commonly used measures of well-being

• Stress
• Family Impact Questionnaire (FIQ) (Donenberg
  Baker)
• Parenting Stress Index (PSI) (Abidin)
• Questionnaire on Resources
• and Stress (QRS QRS-F)
• (Holroyd/Friedrich, Greenberg, Crnic)

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Family Stress by Child Age
Wikler, L.M. (1986). Periodic stresses of
families of older mentally retarded children An
exploratory study. American Journal on Mental
Retardation, 90, 703-706.
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Commonly used measures of well-being(con.)

• Depression
• Beck Depression Inventory (BDI). (Beck)
• Center for Epidemiological Studies Depression
  Scale (CES-D). (Radloff)

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Assessing positive perceptionsHastings Taunt
(2002)

• Direct measures
• Ask parents (semi-structured interviews)
• Administer measure with a positive perception or
  positive impact scale
• Indirect measures
• Assess absence of stress, depression
• Assess presence of perceived competence, life
  satisfaction, or the like

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Families studied

• Sample 1. UC Riverside Families Project
• Young adults with mod/sev
  ID
• N 282 young adults and families
• Data presented here Assessed once
  
• (ages 16 to 26 years)
• Sample 2 . Collaborative Family Study
• PSU/UCLA/UCR
• Children with or without ID
• N 239 children/families
• Data presented here
  Assessed at 3, 4, and 5 years

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What do children bring to the family environment?
Mothers Negative Impact (Stress) by Delay
Status Groups
Negative Impact
Collaborative Family Families Project,
Study, preschoolers young adults


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Mothers Negative Impact by Delay Status, Across
TimeCollaborative Family Study
Negative Impact
Child age in months Delay
status F 23.53, p lt .001
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What do children bring to the family environment?
Mothers Depression by Delay Status Groups
Depression Symptoms

Delay Status
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What do children bring to the family environment?
Mothers Positive Impact by Delay Status Groups
Positive Impact

Delay Status
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What do children bring to the family environment?
Child Clinical Range Behavioral Challenges
Clinical Behavior Disorders ()

REISS SCREEN Clinical Range
CBCL Clinical Range
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What do children bring to the family environment?
Childs behavior problems and mothers negative
impact (stress). Collaborative Family Study
Negative Impact
Behavior Problems F (2, 219) 43.50 p lt
.0001 Delay Status F 2.13 p ns
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Syndrome Specificity Early Childhood Data Child
Total CBCL T scores by age of assessment and
diagnostic group
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Well Being and Behavior Problems, by Syndrome
Families Project (Young Adults)
n112 n87 n59 n23
n112 n87 n59 n23
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Psychological well-being and coping in mothers of
youths with autism, Down syndrome, or fragile X
syndrome(Source Abbeduto et al., 2004).
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What do parents bring to the family
environment?Parental personality trait
Optimism

• ? Optimism and Pessimism are defined as
  generalized positive and negative outcome
  expectancies. These represent relatively stable
  individual difference variables that promote or
  abate psychological well-being (Sheir Carver,
  1985).
• ? Optimists have a favorable outlook on life,
  believe that good rather than bad things will
  happen to them, and consequently are more likely
  than pessimists to face adversity and stress with
  continued effort (Olason Roger, 2001).

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The child behavior problems mother well-being
relationship is buffered by optimism/pessimism
Child behavior problems (Low vs. High)
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What do parents bring to the family
environment? The child behavior problems
mother stress relationship is buffered by
mothers perceived positive impact of the child.
Collaborative Family Study

Negative Impact (Stress)
Child behavior problems
Behavior Problems F89.26 p lt .001
Positive Impact F15.50 p
lt .001 BP X POS
F 5.18 p .006
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Culture MattersWhat is the influence of
culture on parents coping with disability?
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UCR Families Project Findings on Depression

Total CES-D Score
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Well Being by Sample Group
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Mothers Positive Impact by Delay Status Groups
Positive Impact

Delay Status
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Positive Impact, by Child Delay Status and Parent
Ethnicity, Caucasian (non-Latino) vs. Latino
Mother
Father
Positive Impact
Positive Impact
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Family isnt just Mom
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Impact of target child on non-disabled sibling

• Target child MR at home, MR placed, Control
• No group differences in sibling adjustment (e.g.
  behavior problems, self esteem, relationships).
• (Eisenberg, Baker, Blacher, 1998)
• --------------------------------------------------
  -----------------
• Target child Autism, MR, Dev. Lang Dis.
• No group differences in socialization,
  behavior problems, or emotional adjustment.
• (Pilowsky et al., 2004).

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Take Away Points

• The family context of disability is critical to
  study. More needs to be done with respect to
  autism.
• Family well-being is affected most by child
  behavior challenges (and not disability per se).
• Parents often hold positive perceptions of their
  child, regardless of phenotype.

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Take Away Points

• Siblings of children with autism and other
  disabilities are far less negatively affected
  than previously believed.
• Family research will evolve as new information
  about genetic underpinnings of neurodevelopmental
  disorders becomes available.
• Families need to know more about basic research
  findings, as well as their educational
  implications.

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GRADUATE SCHOOL OF EDUCATION
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• The UCR SEARCH Family Autism Resource Center
• Will be the first UC Center to focus on the needs
  of all families including low-income and Spanish
  speaking families in its mission to provide
  support, education, advocacy, and resources in
  the area of autism
• spectrum disorder, including Asperger syndrome.
• Center faculty and graduate students will also
  work
• in partnership with educational leaders in the
  region
• to pioneer new educational models and bi-lingual
  instructional strategies designed for use within
  the classroom setting.

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While most research on autism is justifiably
focused on cause and cure with the eventual
hope for prevention there are hundreds of
thousands of families looking to professionals
for educational and other services that will
help them and their child now.
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SEARCH Mission Statement The mission of the
University of California, Riverside SEARCH Family
Autism Resource Center is to provide support,
education, advocacy, and resources in the area of
autism spectrum disorder to all families
including low-income and Spanish-speaking
families, bridging the gap between diagnosis and
finding appropriate educational services. In
partnership with local educational leaders in the
region, SEARCH will provide information on
evidence-based educational models and
instructional strategies designed for use within
the classroom setting.
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• SEARCH will help families of all income levels
  and
• educational backgrounds to
• Receive proper diagnosis and treatment
• Learn about the disorder and intervention
  options
• Access educational, medical, social support,
  and legal services
• Obtain guidance and support for at-home care
• and treatment
• Ease the transition from early childhood to
  kindergarten

?The UCR SEARCH Family Autism Resource Center,
established by GSOE Faculty Chair, Dr. Jan
Blacher, will be the first UC Center to focus on
the needs of all families including low-income
and Spanish speaking families in its mission to
provide support, education, advocacy, and
resources in the area of autism spectrum
disorder, including Asperger syndrome. Center
faculty and graduate students will also work in
partnership with educational leaders in the
region to pioneer new educational models and
bi-lingual instructional strategies designed for
use within the classroom setting.
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• Current Supporters of SEARCH
• Doug Flutie Jr. Foundation for Autism, Inc.
• Barona Valley Ranch and Casino
• UCR Graduate School of Education
• Individual donors

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Founders Circle and Professional Advisory
Board As SEARCH is still a relatively new
establishment on the University of California,
Riverside campus, members of a Founders Circle,
along with a Professional Advisory Board, are
currently being assembled and connected to the
SEARCH Center.
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Contact Information for SEARCH Marie
Schultz Director of Development Graduate School
of Education 951.827.6388 marie.schultz_at_ucr.edu D
r. Jan Blacher Faculty Chair Graduate School of
Education 951.827.3875 jan.blacher_at_ucr.edu