1. The stress of coping: Caring for an Individual with Autism Spectrum Disorder in New Zealand. Daniel Shepherd, Gwen Ling Tay and Jason Landon

2. 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…

3. 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

4. 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.

5. 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

6. 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.”

8. 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. “

9. 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?

10. 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

11. “ 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.”

12. Experiences of Parents of Children with ASD in NZ …and may put a severe strain on relationships…

13. 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.”

14. Experiences of Parents of Children with ASD in NZ ForAgainst Bigger wins as a parentMoney Support 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…

15. 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. “

16. 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

17. 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. Experiences of Parents of Children with ASD in NZ

18. Current StudyKanne et al., (2014) (n=182)(n=440) AIM SubscalesItemsMSDαcαc M αcαc Restricted/Ritualized Behaviour 823.826.85.82019.327.230.82 Communication/Language 510.964.93.85813.185.320.80 Social-Emotional Reciprocity 718.377.03.87215.097.140.90 Odd/Atypical Behaviour 514.034.51.76112.304.750.72 Experiences of Parents of Children with ASD in NZ Ranked according to impact: (1 st ) Restricted/Ritualized Behaviours (2.98) (2 nd ) Social-Emotional Reciprocity (2.62) (3 rd ) Communication/Language (2.19) (4 th ) Odd/Atypical Behaviour (2.08) (R/R-Behav significantly higher than Comm & Odd Behav (p<.001))

19. 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. “

20. 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

21. Current StudySole Carer (n=182)No (n=126)Yes (n=56) t-test ItemMSDM M t (5 th )* Advocating on behalf of him/her 4.872.004.712.065.242.06-1.63 n.s. (9 th ) Attending medical/therapy appointments 3.632.143.362.253.962.33-1.73 n.s. (7 th ) Doing therapy & educational activities 3.622.243.232.473.622.55-0.98 n.s. (1 st ) Cleaning up after him/her 3.582.043.292.104.132.29-2.47 * (2 nd ) Helping & supervising at mealtimes 3.441.913.211.963.672.17-1.56 n.s. (3 rd ) Settling him/her at bedtime 3.382.253.092.383.652.49-1.54 n.s. (8 th ) Transporting to appointments 3.262.023.022.013.662.31-1.96 n.s. (11 th ) Filling out forms relating to him/her 3.021.932.691.773.632.28-2.97 * (13 th ) Getting him/her ready for bed 2.892.072.462.103.182.49-2.05 * (4 th ) Helping & supervising with toileting 2.842.092.672.392.532.310.275 n.s. (12 th ) Giving medication to him/her 2.642.112.422.312.362.350.147 n.s. (6 th ) Helping & supervising with dressing 2.561.822.342.062.502.12-0.58 n.s. (10 th ) Helping & supervising with bath time 2.551.832.261.982.532.23-0.88 n.s. average Scale Score42.2817.0138.8919.3744.4720.21F=3.34 * * Plant & Saunders (2007) (n=139) Experiences of Parents of Children with ASD in NZ

22. “ 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. “

23. 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. Experiences of Parents of Children with ASD in NZ ItemMSD Partner 4.1002.686 Family 2.7902.322 Friends 2.1202.013 Professional (e.g., GP) 2.4101.964

24. 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.”

25. 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

26. Brief Cope Experiences of Parents of Children with ASD in NZ 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 Coping Style Problem-focused coping Emotion-focused coping Maladaptive coping

27. 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 SampleSole Carer (n=182)No (n=126)Yes (N=56) Brief Cope ItemsMSDαcαc M M F Problem-Focused 617.28 (2.88)4.38.83517.044.2617.854.530.957 n.s. Emotion-Focused 1229.04 (2.42)6.36.72028.966.3729.685.910.079 n.s. Maladaptive 1015.4 (1.54)5.41.84915.625.3615.355.290.729 n.s. Experiences of Parents of Children with ASD in NZ

28. “ 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 “

29. 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

30. Entire Sample Sole Carer (n=182) No (n=126) Yes (N=56) Caregiver Reaction ScaleItemsMSDM M F Self Esteem 626.67 (4.45)4.7226.554.7326.944.570.24 n.s. Disrupted Schedule 518.84 (3.77)3.9218.434.0919.693.321.699 n.s. Lack of Family Support 514.15 (2.83)4.7213.114.4216.464.458.66 ** Financial Problems 310.38 (3.46)3.129.773.0511.762.735.55 * Health Problems 411.86 (2.97)3.4311.458.0512.727.453.828 * Experiences of Parents of Children with ASD in NZ 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.

31. 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.”

32. Experiences of Parents of Children with ASD in NZ

33. 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

34. Measure Task- Related Stress Self- Esteem Disrupted Schedule Lack of Family Support Financial 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 Experiences of Parents of Children with ASD in NZ

35. 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. Experiences of Parents of Children with ASD in NZ ASD Severity (4 AIM scales) Task-related Stress Cognitive Appraisal

36. Test of Moderating Effects A nauseating 140 analyses were undertaken, and 21 moderated relationships uncovered…. Experiences of Parents of Children with ASD in NZ ASD Severity (4 AIM scales) Care-related Stress (CRA) Support or Coping

37. Predictor VariableModerator VariableOutcome VariableR R2R2 F Restricted/Ritualized BehaviourProfessional SupportDisrupted Schedule.168.106***10.188*** Odd/Atypical BehaviourProfessional SupportDisrupted Schedule.098.042**5.697** Social-Emotional ReciprocityProfessional SupportDisrupted Schedule.076.025*4.184** Odd/Atypical BehaviourProfessional SupportLack of Family Support.109.039**6.393*** Restricted/Ritualized BehaviourProfessional SupportFinancial Problems.143.056**8.531*** Odd/Atypical BehaviourProfessional SupportFinancial Problems.089.064**5.225** Social-Emotional ReciprocityProfessional SupportFinancial Problems.058.050**3.164** Communication/LanguageProfessional SupportFinancial Problems.065.039*3.689** Social-Emotional ReciprocityFamily SupportFinancial Problems.048.025*2.687* Restricted/Ritualized BehaviourProfessional SupportTask-Related Stress.344.049**26.580*** Communication/LanguageProfessional SupportTask-Related Stress.328.032**25.234*** Odd/Atypical BehaviourProfessional SupportTask-Related Stress.261.040**18.570*** Social-Emotional ReciprocityProfessional SupportTask-Related Stress.314.023*23.066*** Restricted/Ritualized BehaviourFamily SupportTask-Related Stress.354.043**28.505*** Odd/Atypical BehaviourFamily SupportTask-Related Stress.295.038**22.726*** Social-Emotional ReciprocityFamily SupportTask-Related Stress.335.019*26.233*** Restricted/Ritualized BehaviourPartner SupportTask-Related Stress.333.030*24.756*** Odd/Atypical BehaviourPartner SupportTask-Related Stress.232.023*15.726*** Social-Emotional ReciprocityMaladaptive CopingDisrupted Schedule.199.028*12.660*** Social-Emotional ReciprocityMaladaptive CopingHealth Problems.265.024*18.186*** Communication/LanguageProblem-focused copingTask-Related Stress.351.019*27.757*** Experiences of Parents of Children with ASD in NZ

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

39. 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

40. “ 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. “