the stress of coping: caring for an individual with autism spectrum disorder in new zealand

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 neuro-developmental 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…

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



• 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.


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


“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.”


“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. “


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?

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"



“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.”


…and may put a severe strain on relationships…


“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.”


For AgainstBigger wins as a parent MoneySupport groups open up new social opportunities

Guilt and anxiety

Brings partners and families closer together (Maybe)

Red Tape

More quality time with kids (Maybe)

Other Parents

The media

But is it all bad?

We undertook a study in the NZ context to find out…


“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. “

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%).


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) odd-atypical behaviours (3) communication/language impairment, and (4) social/emotional reciprocity deficits.


Current Study Kanne et al., (2014)(n=182) (n=440)

AIM Subscales 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


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))


“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.“

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.


Current Study Sole Carer

(n=182) No (n=126) Yes (n=56) t-test

Item M SD M SD M SD t

(5th)* Advocating on behalf of him/her 4.87 2.00 4.71 2.06 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)



“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. “

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 M SDPartner 4.100 2.686

Family 2.790 2.322

Friends 2.120 2.013

Professional (e.g., GP) 2.410 1.964


“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.”

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.


Brief Cope


Brief-CopeActive CopingPlanningUsing Instrumental Support AcceptanceHumourReligionUsing Emotional SupportPositive ReframingSelf-DistractionDenialVentingSubstance AbuseBehaviour DisengagementSelf-Blame

Coping StyleProblem-focused copingEmotion-focused coping

Maladaptive coping

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.

Entire Sample Sole Carer(n=182) No (n=126) Yes (N=56)

Brief Cope Items M SD αc 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 15.4 (1.54) 5.41 .849 15.62 5.36 15.35 5.29 0.729n.s.



“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 “

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”).


Entire Sample Sole Carer(n=182) No (n=126) Yes (N=56)

Caregiver Reaction Scale 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.


“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.”

Self-esteem Disrupted Schedule

Financial problems

Health problems

Family support

00.5

11.5

22.5

33.5

44.5

5 ASD SampleSFMI Sample

CRA Subscales

Aver

age

CRA

Sco

re


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….


Measure

Task-Related Stress

Self-Esteem

Disrupted Schedule

Lack of Family

SupportFinancial Problems

Health Problems

Carer Age -0.245** -0.283** -0.07 -0.024 -0.237** 0.04

Child Age -0.270** -0.298** -0.181* -0.041 -0.215* -0.52

Partner Support -.060 -.024 .050 -.367** -.162* -.062

Family Support -.165* .094 -.177* -.649** -.132 -.292**

Friends Support -.199** .123 -.163* -.439** -.062 -.142

Professional Support .046 -.002 -.029 -.271** -.039 -.080

AIM: Restricted/Ritualized Behaviour

.549** .056 .260** .153 .303** .155

AIM: Communication/Language

.542** .100 .197* -.046 .169* -.001

AIM: Social-Emotional Reciprocity

.477** -.050 .236** .031 .085 .143

AIM: Odd/Atypical Behaviour .548** -.031 .220** .107 .161* .202*

Problem-Focused Coping .353** .055 .234** .003 .209** .045

Emotion-Focused Coping .317** .070 .155* -.035 .142 .060

Maladaptive Coping .388** -.342** .396** .313** .152* .467**

*p<.05; **p<.001


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.


ASD Severity(4 AIM scales)

Task-related Stress

Cognitive Appraisal

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

Predictor Variable Moderator Variable Outcome Variable R DR2 F

Restricted/Ritualized Behaviour Professional Support Disrupted Schedule .168 .106*** 10.188***Odd/Atypical Behaviour Professional Support Disrupted Schedule .098 .042** 5.697**Social-Emotional Reciprocity Professional Support Disrupted Schedule .076 .025* 4.184**Odd/Atypical Behaviour Professional Support Lack of Family Support .109 .039** 6.393***Restricted/Ritualized Behaviour Professional Support Financial Problems .143 .056** 8.531***Odd/Atypical Behaviour Professional Support Financial Problems .089 .064** 5.225**Social-Emotional Reciprocity Professional Support Financial Problems .058 .050** 3.164**Communication/Language Professional Support Financial Problems .065 .039* 3.689**Social-Emotional Reciprocity Family Support Financial Problems .048 .025* 2.687*Restricted/Ritualized Behaviour Professional Support Task-Related Stress .344 .049** 26.580***Communication/Language Professional Support Task-Related Stress .328 .032** 25.234***Odd/Atypical Behaviour Professional Support Task-Related Stress .261 .040** 18.570***Social-Emotional Reciprocity Professional Support Task-Related Stress .314 .023* 23.066***Restricted/Ritualized Behaviour Family Support Task-Related Stress .354 .043** 28.505***Odd/Atypical Behaviour Family Support Task-Related Stress .295 .038** 22.726***Social-Emotional Reciprocity Family Support Task-Related Stress .335 .019* 26.233***Restricted/Ritualized Behaviour Partner Support Task-Related Stress .333 .030* 24.756***Odd/Atypical Behaviour Partner Support Task-Related Stress .232 .023* 15.726***Social-Emotional Reciprocity Maladaptive Coping Disrupted Schedule .199 .028* 12.660***Social-Emotional Reciprocity Maladaptive Coping Health Problems .265 .024* 18.186***Communication/Language Problem-focused coping Task-Related Stress .351 .019* 27.757***



“It is very socially isolating as each ASD person has their various problems. Friends with "normal" children always drift away eventually. “

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.



“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. “

the stress of coping: caring for an individual with autism spectrum disorder in new zealand

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