Post on 01-Aug-2020
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Marsha Mailick Seltzer
Parenting Adults with Autism:
Profiles of Resilience and
Vulnerability
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
What is Autism?
A developmental disability beginning before
age 3, with impairments in communication,
social interaction, and behavior.
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Autism Across the Life Course
Autism is a “lifelong disorder whose features
change with development” (Piven et al.,
1996).
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
NIH Inter-Agency Coordinating
Council on Autism (1/19/10)
Question 6: What does the future hold,
particularly for adults?
Need for studies of the scope and impact of the
spectrum of autism in adults, including critical life
transitions.
Need for longitudinal studies that follow carefully
characterized cohorts and their families into
adulthood to understand the risk and protective
factors that account for quality of life outcomes.
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
1943 article describing the
first 11 children diagnosed with autism
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Kanner’s First Case (from The Atlantic 9/10):
Donald Gray Triplett (age 77)
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Avoidance of Research on the Family
• Blaming the family
• “Refrigerator mothers”
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
AAA Study Timeline
Time 1
12 Years
18 Months
Time 2 Time 3 Time 4 Time 6 Time 7 Time 8
Time 5
Daily Diary
Daily Diary
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
AAA Study Aims
To track how the symptoms of autism change
during adolescence and adulthood
To examine the reciprocal influences of family
and the individual with ASD
family to individual with ASD
individual with ASD to family
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Topics for Today
How does the daily life of mothers of adults with ASD differ from the daily life of mothers with adult children without disabilities, particularly regarding daily stress?
What are the biological impacts of daily stress?
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Why Focus on Mothers
and their Stress?
Mothers are the primary
caregivers in most (but
not all) families in our
research.
A focus on stress is just
one perspective, and it
doesn’t outweigh the
importance of research
on resilience.
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Research Design:
“Study within a Study”
7 full family-wide assessments over 12 years, collecting comprehensive data about the mother and child with ASD (and at times, the father and siblings) – including behavior problems.
Daily Diary Study embedded in the ongoing study, repeated 2 times – including behavior problems.
Time 5 Diary Study: 2006-2007
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Daily Diary Sample Characteristics
(Son or Daughter with ASD)
Age: 18-53 (mean = 24.7)
79% male
all living with parents
57% had intellectual disability
74% verbal (uses 3+ word phrases)
95% qualified for a diagnosis of Autistic Disorder
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Daily Diary Sample
Characteristics (Mothers)
Mean age: 53.9 years (range: 40 – 85)
79% married
79% had at least some college education
64% taking prescription medication
Household income: ~ $45,000 -$50,000
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Daily Diary Study Paradigm
8 days, 15 min telephone calls every evening, assessment of time use, daily stresses (including BPs), positive events, mood, physical health.
On days 2 – 5, participants collect 4 saliva samples each day (when they wake up, 30 minutes later, at lunch, at bedtime). Cortisol (a stress hormone) measured in saliva.
Paradigm derived from MIDUS study, which provided a nationally representative normative comparison group.
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
MIDUS Comparison Group MIDUS (Midlife in the US) - nationally
representative sample of more than 7000 adults aged 35-84.
MIDUS Daily Diary Study included 1265 of these adults.
Matched on mothers’ education, income, marital status, having a child living at home --but no child with disabilities.
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Average Daily Time Use
0
1
2
3
4
5
6
7
8
Sleeping Childcare Chores Work Leisure Watching
TV
Physical
Activity
Autism
Comparison
Nu
mb
er
of
Ho
urs *
* *
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Percent of Days with Fatigue and
Interference with Work
0
5
10
15
20
25
30
35
40
45
50
55
Fatigue Interference w ith Work
Autism
Comparison
Pe
rce
nt
of
Da
ys
*
*
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Percent of Days with Stress
0
5
10
15
20
25
30
35
40
45
50
55
Arguments Avoided
Arguments
Work Stress Home Stress Netw ork Stress
Autism
Comparison
Pe
rce
nt
of
Da
ys
* *
*
*
*
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Daily Exchange of
Emotional Support
0
10
20
30
40
50
60
Gave Emotional
Support
Received
Emotional
Support
Autism
Comparison
Pe
rce
nt
of
Da
ys
*
*
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Maternal Daily Well-Being
0
5
10
15
20
25
Positive Affect Negative Affect
Autism
Comparison
*
*
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Daily Life of Mothers of Adolescents
and Adults with Autism Less positive affect, more negative affect
More fatigue
More intrusions in their work day
More time spent in childcare, chores
Less time spent on leisure
More stress of all types
Greater exchange of emotional support
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Daily Life of Mothers of Adolescents
and Adults with Autism
These mothers live very intense lives.
What are the consequences of this level of
intensity for the mother’s health, across
many years and decades?
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Physiological Effects of
Daily Stress
Cortisol measured 4x/day for 4 days as part of
the Daily Diary Study (Days 2 - 5).
Saliva is collected on “salivettes” and analyzed
for cortisol.
Cortisol is a stress hormone that has a very
characteristic pattern of expression during the
day.
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Normal Pattern of Cortisol Expression
0
5
10
15
20
25
30
Wake Out of Bed Lunch Go to bed
Time of Day
Co
rtis
ol (n
mo
l/L
)
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Normal Pattern of Cortisol
Expression In healthy individuals, cortisol rises early in the
day to help us “rev up” for the day’s challenges
(the morning rise) and declines thereafter.
At the end of the day, cortisol is very low which
allows us to get adequate rest.
Dysregulation of cortisol has been linked to
physical and mental health problems.
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Dysregulation of Cortisol
Acute stress –
hyperactivation
Chronic stress –
hypoactivation
Parents of children
with cancer
PTSD
Diurnal Rhythm of Cortisol
0
5
10
15
20
25
30
Awakening 30 min after Lunch Bedtime
Tme of collection
Co
rtis
ol le
vel (n
mo
l/L
) Hyperactivity
Normal
Hypoactivity
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Which Pattern of Cortisol in
Mothers of Individuals with ASD?
Acute stress of parenting, which would
lead to hyperactivation?
A normative pattern?
Chronic stress of parenting, leading to
hypoactivation?
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Cortisol Expression by Groups
0
5
10
15
20
25
30
Wake Out of Bed Lunch Go to bed
time of collection
Co
rtis
ol le
ve
l (n
mo
l/L
)
Comparison
Autism
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Hypoactivation
Reflective of the toll taken by chronic stress
and the fatigue reported in the Diary Study.
What factors predict hypoactivation of cortisol?
Behavior problems of the individual with ASD?
History (measured over a 5 year period between
Time 1 – Time 4)
Daily (measured every day during diary study)
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
AAA Study Timeline
Time 1
12 Years
18 Months
Time 2 Time 3 Time 4 Time 6 Time 7 Time 8
Time 5
Daily Diary
Daily Diary
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Behavior Problems (Scales of
Independent Behavior - Revised
Episodes of:
Repetitive
Uncooperative
Withdrawn or inattentive
Socially offensive
Self-injurious
Aggressive to others
Destructive of property
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Behavior Problems
Measured at Times 1-4
Averaged across these 4 points –
chronic stress
Divided into those below and above the
clinical cut-off
Low history of BPs
High history of BPs
Measured each Diary day– acute stress
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
History of Behavior Problems:
Chronic Stress (Time 1-Time 4)
0
10
20
30
40
50
60
Perc
en
t o
f F
am
ilie
s
Below Above
Clinical Cut-Off of the SIB-R
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
History of Behavior Problems
and Cortisol
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Daily Behavior Problems:
Acute Stress
0
10
20
30
40
50
60
70
80
90
100
Repetitive
Behavior
Withdrawn Uncooperative Socially
Offensive
Hurtful to
Property
Hurtful to
Others
Hurtful to Self Any Behavior
Problem
Pe
rce
nt
of
Ch
ild
ren
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
How Do Chronic and Acute
Stress Interact?
Chronic stress “sets the stage” for how
each day’s behavior problems are
experienced by the mother.
Is the day a typical day for the child or an
unusual day?
Do mothers habituate to chronic stress
and become less reactive to daily
behavior problems?
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
How Do Chronic and Acute
Stress Interact?
Question: Do yesterday’s BPs predict today’s
cortisol pattern in the mother?
Hypothesis: the greater the number of BPs
yesterday, the higher the morning rise of
cortisol.
Question: Will the mother’s cortisol response
reflect her exposure to chronic stress of BPs?
Hypothesis: the greater the history of BPs, the
less acute the morning rise (habituation).
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Interaction between Daily BP and History
of BP on Cortisol – Morning Rise
Morning Rise by Daily BP with History of BP
0
5
10
15
20
25
0 1 2 3 4 5 6 7
# BP-previous day
Mo
rnin
g R
ise
(ou
t o
f b
ed
- w
akeu
p)
History of BP: low
History of BP: high
**
+
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Interpretation:
Impact of BPs
Begins to explain pattern of
hypoactivation of cortisol in ASD
sample.
Unanswered question: Is hypoactivation
an adaptive response or is it a risk
factor for poor health?
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Going to Scale:
Research
What is the long-term effect of cortisol dysregulation on mothers’ health?
What psychosocial factors buffer the effect of behavior problems on maternal cortisol and health?
Replication of this study in Fragile X.
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Going to Scale:
Services and Policy
Expansion of interventions to adolescents and adults with ASD – to reduce BPs, etc.
Supports for mothers – to reduce the extent of fatigue, work disruptions, and more leisure.
New intervention program for families of adolescents during the transition years (Dr. Leann Smith) – “Transitioning Together.”
w a i s m a n c e n t e r , u n i v e r s i t y o f w i s c o n s i n – m a d i s o n
Acknowledgements
Jan S. Greenberg, PhD, Co-PI
Gael Orsmond, PhD
Leann Smith, PhD
Julie Lounds Taylor, PhD
Paul Shattuck, PhD
Sigan Hartley, PhD
Jinkuk Hong, PhD
Renee Makuch
Catherine Lord, PhD – Univ. of Michigan
David Almeida, PhD – Penn State University
Funding
NIA (R01 AG08768)
NICHD (P30 HD03352, T32 HD07489 )