parenting adults with autism: profiles of resilience …...parenting adults with autism: profiles of...

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


What is Autism?

A developmental disability beginning before

age 3, with impairments in communication,

social interaction, and behavior.


Autism Across the Life Course

Autism is a “lifelong disorder whose features

change with development” (Piven et al.,

1996).


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.


1943 article describing the

first 11 children diagnosed with autism


Kanner’s First Case (from The Atlantic 9/10):

Donald Gray Triplett (age 77)


Avoidance of Research on the Family

• Blaming the family

• “Refrigerator mothers”


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


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


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?


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.


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


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


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


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.


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.


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 *

* *


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

*

*


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

* *

*

*

*


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

*

*


Maternal Daily Well-Being

0

5

10

15

20

25

Positive Affect Negative Affect

Autism

Comparison

*

*


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


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?


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.


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

)


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.


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


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?


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


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)


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


Behavior Problems (Scales of

Independent Behavior - Revised

Episodes of:

Repetitive

Uncooperative

Withdrawn or inattentive

Socially offensive

Self-injurious

Aggressive to others

Destructive of property


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


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


History of Behavior Problems

and Cortisol


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


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?


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).


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

**

+


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?


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.


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.”


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 )

parenting adults with autism: profiles of resilience …...parenting adults with autism: profiles of...

Documents