The stress of coping: Caring for an
Individual with Autism Spectrum
Disorder in New Zealand.
Daniel Shepherd, Gwen Ling Tay and Jason Landon
Experiences of Parents of Children with ASD in NZ
• Autism spectrum disorders are a family of neurodevelopmental syndromes with approximately 1%
prevalence
• It is estimated that 40,000 (120,000?) diagnoses of
Autistic Spectrum Disorder have been made in NZ.
• USA: $90 billion per annum on treating ASD.
• The Combatting Autism Act (2014): $3 Billion to
ASD research – over half on genetics…
Experiences of Parents of Children with ASD in NZ
Autistic Spectrum Disorder according to the DSM-V:
• Deficits in social communication: 1 (mild) to 3 (severe)
• Restricted or repetitive patterns of behaviour or
interests: 1(mild) to 3 (severe)
• Presentation in the early developmental period
• Clinically significant impairment in functioning
• Not better explained by another disability or global
developmental delay
Experiences of Parents of Children with ASD in NZ
• Caring for a child with ASD has challenges above
and beyond raising a neurotypical child.
• …and even other developmental disorders…
• But not only can parenting stress lead to
degraded health, wellbeing, and functioning in the
parent…
• …it can also impede the ASD child’s development
and impede interventions.
Experiences of Parents of Children with ASD in NZ
Parents with children of ASD:
• Have higher levels of stress & anxiety than other parents
• Have more difficulty reconciling work and childcare
• Have more difficulty accessing child care, after-school
care, and extracurricular activities
• Spend considerable amounts of time learning about ASD
• Experience multiple burdens in working with the
educational system
• Face substantial financial hurdles in raising their child
Experiences of Parents of Children with ASD in NZ
“Before my second son with Autism was born, I worked as
a Business Analyst for an International Computer Company.
That was 17 years ago and I haven't worked since. My son
is non-verbal and totally dependant on me to try and
communicate his needs and wants. I have to try and 'read'
how he is feeling through his very beautiful eyes.“
“I have had anxiety and depression due to living with
autism. It is the hardest job I have ever done and my child
is high functioning. It is stressful and disruptive to the
whole family and difficult. Still I love my child.”
Experiences of Parents of Children with ASD in NZ
“Autism isn't just isolating for the person
with the condition, it's isolating for everyone
in the family.”
“It is difficult to feel positive about the long
term future or plan for the long term future as
there is very little information as to the services
or organisations that will be able to assist in the
care of our children as they come into
adulthood. “
Experiences of Parents of Children with ASD in NZ
Annual cost of raising a child in the US. Over 18
years this is a cost of over a million dollars per child
with ASD. Based on 2011 data: an underestimate?
Experiences of Parents of Children with ASD in NZ
And ASD likes
company….
“A average of 3.2
coexisting disorders or
problems were
reported, including a
third of children
presenting with severe
hyperactivity/ADHD"
Experiences of Parents of Children with ASD in NZ
“As well as autism, we have ADHD, anxiety,
depression, PDD NOS and a few other things in the
mix. As well he needs to be medicated with Ritalin
3 times a day, and needs to have a melatonin
tablet at night otherwise does not sleep for more
than 3 hours.”
Experiences of Parents of Children with ASD in NZ
…and may put a severe strain on relationships…
Experiences of Parents of Children with ASD in NZ
“When my son was 4, I remarried and during this
marriage had two more children. My marriage
broke up in 2013 after the relationship between
my son and husband became increasingly
unworkable over several years. My son’s ASD was
largely to blame for this - but I see this is because
of my ex-husbands unwillingness to accept his
condition and work with him and me, to keep our
family together.”
Experiences of Parents of Children with ASD in NZ
But is it all bad?
For
Bigger wins as a parent
Support groups open up new
social opportunities
Brings partners and families
closer together (Maybe)
More quality time with kids
(Maybe)
Against
Money
Guilt and anxiety
Red Tape
Other Parents
The media
We undertook a study in the NZ context to find out…
Experiences of Parents of Children with ASD in NZ
“As hard as things are for my family and I financially, I love
our son, his ASD has blessed our family immensely.”
“I love my boy to bits. I wish I could be stronger in all ways
to be able to do more for him. He is a beautiful person full
of potential, but can be hard work.”
“There is never a break. You go to bed with a weight
(disturbed nights a normal occurrence) and you wake up
with a weight. Many people are only fair weather friends
and don't won't to know. You are on your own. “
Experiences of Parents of Children with ASD in NZ
Participants
• 184 Respondents (22 males and 162 females).
• Average age of 45.27 years (SD=9.30).
• Caring for sons (n=155) or daughters (n=28) with ASD for an
average of 11.83 years (SD = 8.56).
• The average age of children was 13.30 years (SD = 10.91).
• The average onset of ASD symptoms being 2.15 years (SD = 2.048).
• A total of 128 parents reported being in a relationship in which caring
tasks were shared.
• While 56 identified themselves as solo-parents (31%).
Experiences of Parents of Children with ASD in NZ
Autism Impact Measure
• Severity of ASD symptoms were measured using the AIM,
developed by Kanne et al. (2013).
• A total of 25-parent-rated items probing the impact of ASD
symptoms on the child’s daily functioning with reference to the
last two weeks.
• The AIM uses a 5 point Likert-scale ranging from 1 (“Not at
All”) to 5 (“Severely”).
• The AIM has four subscales: (1) repetitive behaviours (2) oddatypical behaviours (3) communication/language impairment,
and (4) social/emotional reciprocity deficits.
Experiences of Parents of Children with ASD in NZ
Current Study
(n=182)
Kanne et al., (2014)
(n=440)
Items
M
SD
αc
M
SD
αc
Restricted/Ritualized Behaviour
8
23.82
6.85
.820
19.32
7.23
0.82
Communication/Language
5
10.96
4.93
.858
13.18
5.32
0.80
Social-Emotional Reciprocity
7
18.37
7.03
.872
15.09
7.14
0.90
Odd/Atypical Behaviour
5
14.03
4.51
.761
12.30
4.75
0.72
AIM Subscales
Ranked according to impact:
(1st) Restricted/Ritualized Behaviours (2.98)
(2nd) Social-Emotional Reciprocity (2.62)
(3rd) Communication/Language (2.19)
(4th) Odd/Atypical Behaviour (2.08)
(R/R-Behav significantly higher than Comm & Odd Behav (p<.001))
Experiences of Parents of Children with ASD in NZ
“My son is a wonderful happy little chap with the
most beautiful smile I love him to bits he is the
most handsome boy, but his constant issues with
noises, food, repetitive behaviour, lack of sleep
etc really gets me down. I have had to give up
work because of his needs.“
Experiences of Parents of Children with ASD in NZ
Task-related stress
• Measured using a subset of a 22-item checklist originally developed by
Plant and Sanders (2007), assisted by parents and medical
professionals.
• From the original 22 items, we compiled a 13-item checklist by selecting
the top 10 most stressful tasks for both men and women (where seven
of the items overlapped).
• Participants rated their stress levels when conducting care-related tasks
using a 7-point Likert-scale ranging from 1 (“Not at all Stressful”) to 7
(“Very Stressful”).
• Scores for each care-giving task were then summed to provide a total
score with higher scores indicating greater stress.
Experiences of Parents of Children with ASD in NZ
Current Study
Sole Carer
t-test
Item
(5th)* Advocating on behalf of him/her
(n=182)
M
SD
4.87
2.00
No (n=126)
M
SD
4.71
2.06
Yes (n=56)
M
SD
5.24
2.06
-1.63n.s.
(9th) Attending medical/therapy appointments
3.63
2.14
3.36
2.25
3.96
2.33
-1.73n.s.
(7th) Doing therapy & educational activities
3.62
2.24
3.23
2.47
3.62
2.55
-0.98n.s.
(1st) Cleaning up after him/her
3.58
2.04
3.29
2.10
4.13
2.29
-2.47*
(2nd) Helping & supervising at mealtimes
3.44
1.91
3.21
1.96
3.67
2.17
-1.56n.s.
(3rd) Settling him/her at bedtime
3.38
2.25
3.09
2.38
3.65
2.49
-1.54n.s.
(8th) Transporting to appointments
3.26
2.02
3.02
2.01
3.66
2.31
-1.96n.s.
(11th) Filling out forms relating to him/her
3.02
1.93
2.69
1.77
3.63
2.28
-2.97*
(13th) Getting him/her ready for bed
2.89
2.07
2.46
2.10
3.18
2.49
-2.05*
(4th) Helping & supervising with toileting
2.84
2.09
2.67
2.39
2.53
2.31
0.275n.s.
(12th) Giving medication to him/her
2.64
2.11
2.42
2.31
2.36
2.35
0.147n.s.
(6th) Helping & supervising with dressing
2.56
1.82
2.34
2.06
2.50
2.12
-0.58n.s.
(10th) Helping & supervising with bath time
2.55
1.83
2.26
1.98
2.53
2.23
-0.88n.s.
average Scale Score
42.28
17.01
38.89
19.37
44.47
20.21
F=3.34*
* Plant & Saunders (2007) (n=139)
t
Experiences of Parents of Children with ASD in NZ
“I would have answered much differently three
years ago. Until he was toilet trained - which took
6 weeks and involved intensive waking to
sleeping effort by parents and ABA therapists at a
cost of over $5000 - I was damn near suicidal. He
was a poo-smearer and took three goes to toilet
train before the final intensive effort when he
was 5. “
Experiences of Parents of Children with ASD in NZ
Care-related Support Networks
• Participants were asked to rate how much support they
received from their partner, family, friends and medical
professionals using a 7 point Likert-scale ranging from 1
(“Not Supported”) to 7 (“Very Supported”).
• A “N/A” option was provided for each category of support.
Item
Partner
Family
Friends
Professional (e.g., GP)
M
4.100
2.790
2.120
2.410
SD
2.686
2.322
2.013
1.964
Experiences of Parents of Children with ASD in NZ
“I have a wonderful husband who has become self
employed to help me. We moved towns because
family not supportive at all and I lost the friends I
made at play group and plunket when my son
started biting and hurting kids.”
“While I am fortunate to have a good husband and
we share much of the responsibility, many of our
decisions are based around our autistic boys - about
the future, about working, about what we choose
to do when we go out as a family.”
Experiences of Parents of Children with ASD in NZ
Brief Cope
• Coping was measured using the 28-item Brief COPE (Carver, 1997)
• Problem-focused, emotion-focused, and maladaptive coping
scores were created.
• Participants are required to rate how frequently they utilise the
various coping strategies when faced with care-related stress using
a 4 point Likert-scale ranging from 1 (“I Haven’t Been Doing This At
All”) to 4 (“I’ve Been Doing This A Lot”).
• Higher scores indicate more frequent use of that strategy.
Experiences of Parents of Children with ASD in NZ
Brief Cope
Coping Style
Problem-focused coping
Emotion-focused coping
Maladaptive coping
Brief-Cope
Active Coping
Planning
Using Instrumental Support
Acceptance
Humour
Religion
Using Emotional Support
Positive Reframing
Self-Distraction
Denial
Venting
Substance Abuse
Behaviour Disengagement
Self-Blame
Experiences of Parents of Children with ASD in NZ
Brief Cope
Items
Entire Sample
(n=182)
M
SD
αc
Sole Carer
No (n=126)
Yes (N=56)
M
SD
M
SD
F
Problem-Focused
6
17.28 (2.88)
4.38
.835
17.04
4.26
17.85
4.53
0.957n.s.
Emotion-Focused
12
29.04 (2.42) 6.36
.720
28.96
6.37
29.68
5.91
0.079n.s.
Maladaptive
10
.849
15.62
5.36
15.35
5.29
0.729n.s.
15.4 (1.54)
5.41
Both of the problem-focused and emotion-focused averages
were significantly different from the Maladaptive coping
average (p<.001), but not from each other (p=.83).
There were no differences between those identifying as sole
carers and those who did not.
Experiences of Parents of Children with ASD in NZ
“It is very difficult to admit that you are not coping as a
care giver, particularly if it is your child you are caring for.
Some people view your inability to cope as a lack of love
on your part. I can't imagine my life without my son, but
there are times when I just want a break.“
“I do drown my sorrows at times down the bottom of a
bottle & wonder where the hell did I go wrong is this my
fault & what the hell did I do to deserve all this most of
the time I wish I could just jump in a hole & disappear, as
the days go by I get more & more depressed “
Experiences of Parents of Children with ASD in NZ
Care-related Stress
• Care-related parent stress was measured using the Caregiver
Reaction Scale (CRA: Brouwer et al., 2004),
• 24 items measure specific aspects of a caregiving situation, and
the carer’s negative and positive reactions to caring for an
individual with a disability or disorder.
• The CRA consists of five subscales representing care-related
stress: (1) self-esteem; (2) lack of family support; (3) financial
problems; (4) disrupted schedule, and; (5) health problems.
• Participants rate the items using a 5 point Likert-scale ranging
from 1 (“Strongly Disagree”) to 5 (“Strongly Agree”).
Experiences of Parents of Children with ASD in NZ
Entire Sample
(n=182)
Caregiver Reaction Scale
Sole Carer
No (n=126)
Yes (N=56)
Items
M
SD
M
SD
M
SD
F
Self Esteem
6
26.67 (4.45)
4.72
26.55
4.73
26.94
4.57
0.24n.s.
Disrupted Schedule
5
18.84 (3.77)
3.92
18.43
4.09
19.69
3.32
1.699n.s.
Lack of Family Support
5
14.15 (2.83)
4.72
13.11
4.42
16.46
4.45
8.66**
Financial Problems
3
10.38 (3.46)
3.12
9.77
3.05
11.76
2.73
5.55*
Health Problems
4
11.86 (2.97)
3.43
11.45
8.05
12.72
7.45
3.828*
Note that for the “Self-Esteem” measures higher scores
represent greater care-related self-esteem, whilst for the
remaining measures the higher the score the higher the
stress.
Experiences of Parents of Children with ASD in NZ
“I have had some major challenges in my life but
this takes the cake, it is mentally and physically
exhausting and my daughter would be considered
quite high functioning.“
“The stress of caring for my son with a disability
has caused HUGE financial, emotional and
physical drain on me and our family. We still love
him dearly, but don't know how long I can
continue caring for him.”
Average CRA Score
Experiences of Parents of Children with ASD in NZ
ASD Sample
5
4.5
4
3.5
3
2.5
2
1.5
1
0.5
0
SFMI Sample
Self-esteem Disrupted
Schedule
Financial
problems
CRA Subscales
Health
problems
Family
support
Experiences of Parents of Children with ASD in NZ
Relationships amongst the measures
• If a change in one measure (e.g., odd/atypical behaviour)
coincides with a change in another (e.g., disrupted schedule)
then we say they are related.
• This is not always to say that one is the cause and the other an
effect – causality is always complicated.
• Relationships between measures were examined using:
1) A simple statistical measure (correlation coefficients)
2) Mediator analysis….
3) Moderator analysis….
Experiences of Parents of Children with ASD in NZ
Measure
Carer Age
Child Age
Partner Support
Family Support
Friends Support
Professional Support
AIM: Restricted/Ritualized
Behaviour
AIM: Communication/
Language
AIM: Social-Emotional
Reciprocity
AIM: Odd/Atypical Behaviour
Problem-Focused Coping
Emotion-Focused Coping
Maladaptive Coping
*p<.05; **p<.001
TaskRelated
Stress
-0.245**
-0.270**
-.060
-.165*
-.199**
.046
Disrupted
Schedule
-0.07
-0.181*
.050
-.177*
-.163*
-.029
Lack of
Family
Support
-0.024
-0.041
-.367**
-.649**
-.439**
-.271**
SelfEsteem
-0.283**
-0.298**
-.024
.094
.123
-.002
Financial
Problems
-0.237**
-0.215*
-.162*
-.132
-.062
-.039
Health
Problems
0.04
-0.52
-.062
-.292**
-.142
-.080
.549**
.056
.260**
.153
.303**
.155
.542**
.100
.197*
-.046
.169*
-.001
.477**
-.050
.236**
.031
.085
.143
.548**
.353**
.317**
.388**
-.031
.055
.070
-.342**
.220**
.234**
.155*
.396**
.107
.003
-.035
.313**
.161*
.209**
.142
.152*
.202*
.045
.060
.467**
Experiences of Parents of Children with ASD in NZ
Test of Mediating Effects
There was no evidence to support the notion that caregivers’
cognitive appraisals have a mediating effect on the
relationship between the severity of ASD symptoms and
parents’ task-related stress.
Cognitive
Appraisal
ASD Severity
(4 AIM scales)
Task-related
Stress
Experiences of Parents of Children with ASD in NZ
Test of Moderating Effects
A nauseating 140 analyses were undertaken, and 21
moderated relationships uncovered….
ASD Severity
(4 AIM scales)
Care-related
Stress (CRA)
Support or
Coping
Experiences of Parents of Children with ASD in NZ
Predictor Variable
Moderator Variable
Outcome Variable
Restricted/Ritualized Behaviour
Odd/Atypical Behaviour
Social-Emotional Reciprocity
Odd/Atypical Behaviour
Restricted/Ritualized Behaviour
Odd/Atypical Behaviour
Social-Emotional Reciprocity
Communication/Language
Social-Emotional Reciprocity
Restricted/Ritualized Behaviour
Communication/Language
Odd/Atypical Behaviour
Social-Emotional Reciprocity
Restricted/Ritualized Behaviour
Odd/Atypical Behaviour
Social-Emotional Reciprocity
Restricted/Ritualized Behaviour
Odd/Atypical Behaviour
Social-Emotional Reciprocity
Social-Emotional Reciprocity
Communication/Language
Professional Support
Professional Support
Professional Support
Professional Support
Professional Support
Professional Support
Professional Support
Professional Support
Family Support
Professional Support
Professional Support
Professional Support
Professional Support
Family Support
Family Support
Family Support
Partner Support
Partner Support
Maladaptive Coping
Maladaptive Coping
Problem-focused coping
Disrupted Schedule
Disrupted Schedule
Disrupted Schedule
Lack of Family Support
Financial Problems
Financial Problems
Financial Problems
Financial Problems
Financial Problems
Task-Related Stress
Task-Related Stress
Task-Related Stress
Task-Related Stress
Task-Related Stress
Task-Related Stress
Task-Related Stress
Task-Related Stress
Task-Related Stress
Disrupted Schedule
Health Problems
Task-Related Stress
R
DR2
F
.168
.098
.076
.109
.143
.089
.058
.065
.048
.344
.328
.261
.314
.354
.295
.335
.333
.232
.199
.265
.351
.106***
.042**
.025*
.039**
.056**
.064**
.050**
.039*
.025*
.049**
.032**
.040**
.023*
.043**
.038**
.019*
.030*
.023*
.028*
.024*
.019*
10.188***
5.697**
4.184**
6.393***
8.531***
5.225**
3.164**
3.689**
2.687*
26.580***
25.234***
18.570***
23.066***
28.505***
22.726***
26.233***
24.756***
15.726***
12.660***
18.186***
27.757***
Experiences of Parents of Children with ASD in NZ
“It is very socially isolating as each ASD person
has their various problems. Friends with
"normal" children always drift away eventually. “
Experiences of Parents of Children with ASD in NZ
Recommendations
Promote the importance of professional support to
caregivers of individuals with ASD.
Provide subsidies for professional interventions.
Family and whanau should be encouraged to parents.
Perhaps adopt problem-focused coping strategies to
enable parents to cope with their caregiving burden in
an effective and healthy manner.
Experiences of Parents of Children with ASD in NZ
“Full of worries about my autistic child's future
when I am gone. No matter what promises given
by family members of continued caregiving when
I am gone, I still don't feel assured about his
wellbeing in others' care. No one knows him
better than I do. I always fear that his autistic
traits will pose to be a burden to others and this
will frustrate them in caring him with much
tolerance. “