Copyright is owned by the Author of the thesis.  Permission is given for 
a copy to be downloaded by an individual for the purpose of research and 
private study only.  The thesis may not be reproduced elsewhere without 
the permission of the Author. 
 



 

 

Support Needs of ASD Families in the Manawatu DHB Catchment Area 

 

 

 

A thesis presented in partial fulfilment of the requirements for the degree of 

 

 

 

Master of Arts 

in 

Psychology 

 

 

 

at Massey University, Manawatū, New Zealand. 

 

 

 

 

David Hyrum James West 

2018 

 

 

 

 



ii 

 

Abstract 

Autistic Spectrum Disorder (ASD) is becoming increasingly understood as being both 

widely heterogeneous and complex for the individual on the spectrum (Baranek, 2002; 

Dunlap & Fox, 1999; Fox, Dunlap, & Cushing, 2002; Fox, Dunlap, & Philbrick, 1997; 

Gardiner & Iarocci, 2012; Horlin, Falkmer, Parsons, Albrecht, & Falkmer, 2014; Ministries of 

Health and Education, 2008; Oono, Honey, & McConachie, 2013). Similarly, families are 

also highly variable and complex; they are arguably the most important support unit a child 

with ASD has, with their own resources, constraints, values and beliefs (Dunlap & Fox, 1999; 

Fox et al., 2002; Gardiner & Iarocci, 2012; Moes & Frea, 2002). Service individualisation, 

which accounts for such variances within the individual, and the collective, is broadly seen as 

critical for service delivery success (Baranek, 2002; Billstedt, Gillberg, & Gillberg, 2011; 

Dunlap & Fox, 1999; Fava et al., 2012; Fox et al., 2002; Fox et al., 1997; Ministries of Health 

and Education, 2008; Odom, Hume, Boyd, & Stabel, 2012). 

To date, little research has gauged the extent of ASD service individualisation abroad, 

and an understanding of how this is done in Aotearoa New Zealand is absent. The intent of 

this research was to investigate whether or not existing services and supports target the 

uniqueness of both the individual with ASD, and their families to enable them to participate 

in society. In particular, a key focus was if services are appropriate, accessible and sufficient.  

To accomplish the intent of the research a concurrent triangulation mixed-methods 

design was utilised. Both quantitative and qualitative data was gathered from caregivers of 

autistic children – firstly, through an online survey featuring several lifespan themes, and 

subsequently, qualitative data was collected through caregiver interviews carried out with 

participants recruited from the MidCentral and Nelson Marlborough District Health Board 

(DHB) areas. 



iii 

 

Analyses of the prioritised qualitative data indicated that a variety of service delivery 

factors prevented families with autistic children from optimal functioning, and participating 

in society. Furthermore, systemic issues were theorised to be the underlying causes of several 

of the difficulties faced by autistic children, and their families.  The importance of 

individualised care packages that meet the needs of the families spoken to was emphasised, 

and the 'wicked problem' (Stace, 2011) of services that are appropriate, accessible and 

adequate remains ongoing. Recommendations for meeting the needs of individuals with ASD 

and their families are discussed. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 



iv 

 

Acknowledgements 

I would like to thank all those who contributed their time, energy, and talents, in order 

to make this research possible. 

Central to the entire effort has been my two co-supervisors, Dr. Kirsty Ross and Dr. 

Don Baken. Thank you both for your patience, kindness, wisdom and perseverance through 

the hundreds of emails, hours on Skype, and hours upon hours of proofreading. From the 

beginning to the end of this research, you both made each experience a learning one, and I am 

the better for it. 

I would also like to thank my cultural supervisor, Dr. Hukarere Valentine, for her 

wisdom, insight, and expertise, and ensuring that every feasible consideration and action was 

taken towards the cultural safety of all.  

My sincere thanks also to Patsy Broad, Jeremy Hubbard and the Human Ethics 

Committee: Southern A, for their prompt, clear and helpful assistance during both the initial 

application, and the revision. 

I would like to thank Barbara Bradnock from the MidCentral DHB for her generous 

support through the letter of support written, and for the scholarship organised. 

A special thanks to that all those who assisted with the challenge of recruitment, 

especially Martyn Matthews and Claire Stewart from The Society for Intellectually 

Handicapped Children (IHC NZ), and Jill Hounsell from the Nelson Marlborough branch of 

Autism New Zealand. Through social media, a huge amount of support was given by 

administrators of Facebook groups; Kim Hall from Autism Action New Zealand; Michelle 

Isaac from Autism in New Zealand; Joanna Giles from ASD Friendly Group; and Sue Kenny 

from VIPS - Equity in Education NZ. 

My sincere thanks also to advocate extraordinaire, Joanne Dacombe, for her 

graciousness, her generosity with her time, and for her expertise with all things ASD related. 



v 

 

To my dear wife, Elena; I thank you for following me to the other side of the planet so 

I could continue my education, and for your unwavering faith in me, and in what I was trying 

to achieve. You are, and will always remain, my greatest blessing. 

My heartfelt appreciation for my family, who have long been gracious and generous 

with their support, and patient with my absence. A special mention for the ‘day-shift’, my 

mother Mary Ann, and sister, Helen, for the hundreds of hours of free babysitting which 

enabled me to work.  

Last, but certainly not least, I would like to thank all the caregivers who took part in 

the research, without whom this research would never have eventuated. Thank you all for 

taking the time to share your experiences with a stranger. Sifting through your family 

triumphs and tragedies has been a solemn responsibility, and I hope that in some way, some 

of your voice gets the audience it deserves.   

 

 

 

 

 

 

 

 

 

 

 

 

 



vi 

 

Table of Contents 

Abstract ii 

Acknowledgements iv 

Table of Contents vi 

List of Figures ix 

List of Tables x 

Introduction 11 

Autism Language 11 

The Pākehā social mainstream: Events leading to the development of the Autism 

Guidelines 13 

The Treaty of Waitangi, Māori health, and Māori ASD literature 16 

Personal viewpoint 20 

Literature Review 23 

Establishing present ASD diagnostic criteria 23 

Positioning present ASD criteria academically and socially 24 

The prevalence of ASD 27 

The impact of Autism 27 

Service individualisation 29 

Diagnosis – the beginning of any service delivery over a lifespan 31 

Education 37 

Personal fulfilment – living in the community 42 

Family life 45 



vii 

 

Transition management 56 

Summary 58 

Method 60 

Design 60 

Participants 63 

Recruitment 64 

Materials 67 

Data gathering 70 

Data analysis 71 

Ethics 73 

Quantitative Results 73 

Demographics 73 

Likert-type scales 77 

Qualitative results 84 

Acknowledging alternative language and perspectives 84 

Diagnosis as a process 86 

Collective impact of diagnosis 94 

Participating in society (inclusion and exclusion) 107 

Systemic causes of service delivery concerns 132 

Discussion 146 

Diagnosis 146 



viii 

 

Impact of diagnosis 148 

Participating in society 152 

Systemic causes 160 

Research strengths 165 

Research weaknesses 166 

Future recommendations 168 

Appendix A. Steering Group Representation 170 

Appendix B. Legislation, Standards and Policies Impacting The NZASG 171 

Appendix C. Service Barriers for Māori Families 173 

Appendix D. Barriers to Māori Service Utilization 174 

Appendix E. Online Questionnaire Advertisement 175 

Appendix F. Online Questionnaire Infosheet 176 

Appendix G. Interview Advertisement 179 

Appendix H. Interview Infosheet 180 

Appendix I. Invitation for Cultural Component in Interviews 183 

Appendix J. Online Questionnaire 184 

Appendix K. Interview Schedule 203 

Appendix L. Ethics Committee Approval 208 

Appendix M. Ethics Amendment Approval 209 

References 210 

 



ix 

 

List of Figures 

Figure 1. Te Whare Tapa Whā, a Māori wellness model developed by Professor Sir Mason 

Durie (Tāne Ora Alliance, 2017) 18 

 

Figure 2. Expanded ASD family life cycle. Adapted from McGoldrick, Carter, and Garcia-

Preto (1999) and Gladding (2010) 32 

 

Figure 3. Concurrent triangulation mixed methods design by Creswell et al. (2003) 62 

 

Figure 4. Mean responses of perceived Accessibility across Diagnosis, Education, Living in 

the Community, Family Life and Managing Transition themed sections. 80 

 

Figure 5. Mean responses of perceived Adequacy across Diagnosis, Education, Living in the 

Community, Family Life and Managing Transitions themed sections 81 

 

Figure 6. Mean responses of perceived Appropriateness across Diagnosis, Education, Living 

in the Community, Family Life and Managing Transitions themed sections 81 

 

Figure 7. Theorised systemic foundations, and individualisation aspects of barriers to service 

delivery 109 

 

 

 

 

 

https://d.docs.live.net/bdb1fa7000b1052c/Thesis/Thesis%20Writing/Thesis%202.32a%20submit.docx#_Toc510191667
https://d.docs.live.net/bdb1fa7000b1052c/Thesis/Thesis%20Writing/Thesis%202.32a%20submit.docx#_Toc510191667


x 

 

List of Tables 

Table 1. Caregivers’ DHB catchments as a percentage 74 

 

Table 2. Caregivers’ combined household income as a percentage 74 

 

Table 3. Level of education of participants as a percentage 75 

 

Table 4. Age of autistic child in care as a percentage 76 

 

Table 5. Time period in tears elapses since diagnosis as a percentage 77 

 

Table 6. Sources of information access by caregivers as a percentage 78 

 

Table 7. Perceived usefulness of information sources as a percentage 79 

 

Table 8. Mean ratings of Appropriateness across service delivery themed section 83 

 

 

 

 

 

 

 

 

 



 

 

Introduction 

In this section the lingual, social, political and personal environment in which this 

research was conducted will be discussed. 

Firstly, language used when referring to those on the spectrum is discussed, especially 

in regard to the two main philosophies which underpin ASD language usage. The intent for 

language usage throughout the thesis is also stated, and the reasoning for the stance taken is 

provided. 

Secondly, the Pākehā social mainstream is discussed in relation to watershed 

moments, some tragic, which sparked the mainstream development of the New Zealand 

Autism Spectrum Guidelines (NZASG), which guide the delivery of autism related services 

in Aotearoa New Zealand. 

Thirdly, the course of Māori health through colonisation is discussed before 

addressing what is presently known in regards to autism service delivery for Māori. 

Following this, the events which led to the only existing research on Māori and autism are 

explored, which became part of the socio-political collaboration that produced the New 

Zealand Autism Guidelines.  

Fourthly, my own worldview is discussed, before reflecting upon a series of 

interpersonal events that led to the research question being developed. 

Autism Language 

Two general philosophies exist regarding how to refer to, or address, those on the 

spectrum, which will be central to the language used in following thesis. Person-first 

language, as was used in the previous sentence is said to be used by those who subscribe to 

the philosophy that prioritising a person before their disability reinforces the idea that a 

person is not their disability, and in doing so turns attention to what a person can do, instead 

of what they cannot (Blaska, 1993; Searing, 2014). The movement for person-first language 



12 

 

has been very successful and is now considered the standard in government documentation, 

as well as many publications across disability literature, however such language is now being 

met with resistance (Collier, 2012) 

Such resistance is found within the second philosophy of autism language, sometimes 

described as identity-first, that critiques the first in a number of ways; such narratives are 

most often sourced among advocate, and self-advocate, sections of the literature, with one of 

the most renown examples being Jim Sinclair (2013). The first objection argues that using “a 

person with autism” infers that the autism can be separated from a person, as an article of 

clothing can be shed from a body; on the contrary autism is said to be inseparable, as it is 

hardwired into how autistics think (Kenny et al., 2016; Sinclair, 2013). The second objection 

is that in saying “a person with autism”, this suggests that even if a person is autistic, it isn’t 

an important characteristic, and isn’t is central to identity (Sinclair, 2013). The third objection 

is that writing “a person with autism” suggests that autism is something bad, to be kept apart 

from someone – as people do not objective to neutral or positive adjectives, such as being 

left-handed, athletic, or muscular (Sinclair, 2013). 

Preference for either type of language is divided, but not uniformly among autistics, 

their families, and professionals; in Collier (2012), parents of autistics are reported to 

generally prefer person-first language, while autistics themselves were said to prefer identity-

first. This differs from Kenny et al. (2016) who reported that identity-first language was 

preferred autistic adults, their families, but resisted by professionals; whereas person-

language was preferred by almost half of professionals, but far fewer autistics and family 

members. 

While recognising that the language debate is ongoing, and is too complex to address 

fully within this research, the author acknowledges both views in the usage of both language 



13 

 

styles throughout (as used by one autistic advocate cited in Collier (2012)), providing variety 

and flexibility for style purposes. 

The Pākehā social mainstream: Events leading to the development of the Autism 

Guidelines 

The Pākehā societal mainstream in Aotearoa New Zealand has long drawn upon 

readily accessible Westernised ways of viewing the world, and also health and disability (in 

contrast to a Māori customary worldview and holistic way of viewing health discussed later) 

Much of the mainstream society’s awareness of autism is attributable to popular media, 

especially mainstream news outlets. 

A few short months into the development of this research, Aotearoa New Zealand 

news media was awash with tributes following the tragic death of a young boy with autism, 

Leon Michael Le Fleming Jayet-Cole, aged five, who passed away in Christchurch Hospital 

due to serious head injuries (Bayer, 2015). Leon left behind a brother, Lucas (also on the ASD 

spectrum), a sister, Nadia, mother Emma Le Fleming Roberts, and step-father James Stedman 

Roberts. In time, Leon’s stepfather would be charged with Leon’s murder, while his mother 

would be charged for failing to get medical treatment for him (A. Clarkson, 2016). Charges 

against Emma Roberts would eventually be discharged, as the prosecution indicated that they 

were no longer pursuing the matter (A. Clarkson, 2016). For Mr Roberts, however, charges 

laid against him were formally discontinued approximately one month following his own 

death, a suspected suicide (D. Clarkson, 2016).  

Since then, in 2016, there has been another death of a child on the ASD spectrum at 

the hands of a parent - Ruby Knox was murdered by her mother in Blenheim. However, the 

plight of Donella and Ruby Knox, were not unknown to the Aotearoa New Zealand public, as 

the local edition of the current affairs television show, 60 Minutes, aired two documentaries 

covering their struggles as a family in dealing with Ruby’s symptoms, and other challenges. 



14 

 

Illustrative in the reduced sentence delivered by Justice Williams, was the assertion that he 

was not responsible for judging the supports offered by the health system, but rather 

determining whether or not Ms Knox “genuinely believed she had been let down by the 

system” (Bayer, 2017). 

Accompanying the sense of tragedy, for the researcher, was also a sense of déjà vu. 

Before Leon and Ruby, there was Jim Helm of Nelson. Jim, aged 27, had his life taken by his 

mother, 70-year-old Nancy, on November the 8th, 1998 (Courtney, 1998). The coroner’s 

inquest found that Nancy had taken both her son’s life, and her own, because she feared for 

his future care if she died. 

However, it is said to be the case of Casey Albury, of Feilding, aged 17, who was 

killed by her mother, Janine Albury Thomson, in 1997, that proved to be a catalyst in turning 

the gaze of mainstream society towards what was occurring for families of a child on the 

ASD spectrum (English, 1998; Stace, 2011). On the 28th of August 1998, following the 

conclusion of Janine Albury Thomson’s trial (during which she was found guilty of 

manslaughter), then Health Minister, Bill English, issued a statement which outlined the 

Ministry of Health’s review of services for people with autism (completed as the Curry report 

(Ministries of Health and Education, 2008)), and their families; and also an independent 

review into the treatment of Casey Albury (English, 1998; Stace, 2011). The Curry report 

findings illustrated a number of gaps in services, and made recommendations to improve 

ASD related services (Ministries of Health and Education, 2008).  

The Autism Services Interdepartmental Working Group (ASIWG) was formed to 

implement the changes recommended by the Curry Report, and also committed to supervise 

the development of a set of guidelines (Ministries of Health and Education, 2008). But it was 

in September 2002, that the Ministry of Health, and the Ministry of Education, began 

working with the Paediatric Society of New Zealand towards mapping out the desired 



15 

 

guidelines, which “was seen as a way of providing evidence-based information for health, 

disability and education professionals and social service agencies for the provision of services 

for people with ASD, their families and whanau (Ministries of Health and Education, 2008, p. 

5)”. 

The ASD Cross Government Officials Group replaced the ASIWG in 2004, and put in 

place the ASD Guideline Steering Group to supervise the guideline project team. The group 

captured the views of service users through the inclusion of both parents of children with 

ASD, as well as adults with ASD themselves; this was intended to build the credibility of the 

project from within, as well as promoting awareness of “of cultural and migrant 

issues”(Ministries of Health and Education, 2008, p. 12). The group also indirectly sought to 

capture the views of users through also including representation from a raft of societies, 

associations, organisations, services, and Ministries (full list in Appendix A). The NZASG is 

also influenced by numerous articles of New Zealand legislation, various standards, and 

policies (full list in Appendix B), and its most recent edition (2016 ed.) is part of the present 

sum of socio-political response to Casey Albury’s death, over 20 years ago; the intent of the 

Guidelines is stated to be one of a ‘living’ document, whereby, in time, it changes and grows 

as knowledge of best practice increases (Ministries of Health and Education, 2008).  

The NZASG is a world first (Ministries of Health and Education, 2008), and can be 

utilised by most who come in contact with those on the spectrum who seek to meet their 

social, health, and educational needs; such as parents, carers, professional caregivers, 

education professionals, policy makers, funders, specialists, primary care practitioners, and 

“any others who make provision for individuals with ASD”(Ministries of Health and 

Education, 2008, p. 2).  

Central to any implementation of the NZASG in Aotearoa New Zealand, is the 

assertion from the Ministry of Health that different people have different responsibilities in 



16 

 

implementing different aspects of the Guidelines, at different levels of society; institutionally, 

Ministries are argued to be responsible for implementation of national initiatives; but other 

recommendations are said to operate at local level socially and relate to how people treat one 

another – the Ministry argues that government funding cannot achieve such implementation 

(Ministry of Health, 2015).  

Furthermore, individualisation, through professional judgement, plays a central role in 

the Guideline’s application, as the guidelines contained are not compulsory. Compulsory 

guidelines, according to the Ministry of Health, must not replace individual judgement upon 

individual circumstances; further, it is argued that compulsory guidelines could be dangerous. 

On the other hand, the non-compulsory nature is interpreted by some as being problematic 

itself, as there are no guarantees stated for service delivery; one advocate observed that a 

major problem arising since the  were published in 2008, is that most of the recommendations 

have not been implemented into service delivery (Anonymous, 10 June 2015).  

The Treaty of Waitangi, Māori health, and Māori ASD literature 

How Māori, and Māori health, are positioned within contemporary Aotearoa New 

Zealand; and how Māori contributions towards autism literature have been made, are both 

questions best understood by first establishing a foundation regarding the effects of 

colonisation. Laying a foundation begins with an additional, or alternative, name; Aotearoa is 

the first given name to the country New Zealand, and it is most commonly said to mean “the 

land of the long white cloud” in Te reo Māori, the language of Māori. Aotearoa is situated in 

the South Pacific, and since 1840, it has been a country primarily consisting of two peoples; 

the indigenous Māori, and the Pākehā, or non-Māori of European decent. 

 Modern Aotearoa New Zealand was founded upon the signing of the Treaty of 

Waitangi (Tiriti o Waitangi) by representatives of the British Crown, and many indigenous 

Māori chiefs throughout the land. Colonial governorship of the country, and subsequently the 



17 

 

country’s own parliament, would see the Crown fail to uphold its treaty obligations, 

especially in regards to Article 2 of the Treaty relating to tino rangatiranga – which is the 

right of self-determination, and self-sovereignty (Mason Durie, 1998). As Anglo-centrism 

prevailed, Māori were forcibly positioned as Other, as Pākehā systems and institutions, 

importantly including health, were taught and upheld by legislation (Nairn, Pega, McCreanor, 

Rankine, & Barnes, 2006). The Pākehā governance over Māori health practices was 

epitomised with The Tohunga Suppression Act of 1907, whereby tohunga (meaning chosen 

experts over a certain area of expertise, such as wood carving) who were normally engaged in 

customary holistic healing practices, were prohibited from doing so, as any practice with a 

spiritual or supernatural element was legislated against. The mismatch of Māori trying to 

exist within Pākehā systems and institutions has been shown to be devastating to Māori 

health outcomes for decades, as Māori are overrepresented in many negative health outcomes 

(M. Durie, 2007).  

Honouring the Treaty, and a Māori health renaissance. Central to the Māori 

renaissance, attributed to occur in the 1970s, is the establishment of the Waitangi Tribunal in 

1975, formed for the purpose of honouring Crown obligations to Māori. This period ushered 

in a commitment to a bicultural nation, although it can be argued that it is mostly Māori who 

can speak, let alone operate, in both Pākehā and Māori domains (cite personal 

communication Hukarere / or reference). Although the promised bicultural country has not 

yet been fully realised, a greater tolerance, in the least, has emerged of things Māori, 

especially in the holistic way that Māori view health.  

Perhaps the most renowned example of a holistic health emerged around this period - 

Te Whare Tapa Whā, a model of health which likens the state of wellbeing to the structural 



18 

integrity of a whare, or house (see Figure 1.). 

Figure 1. Te Whare Tapa Whā, a Māori wellness model developed by Professor Sir Mason Durie 

(Tāne Ora Alliance, 2017) 

Te Whare Tapa Whā was developed through a hui (conference) of Māori health 

workers in 1982, and Mason Durie was formally attributed as being responsible for the 

model’s development (M. Durie, 2001; Rochford, 2004). In this model, the wellness of an 

individual, especially Māori, is attributed to four interdependent sides of the whare, where 

each must be considered and catered for in order to promote health, as weakness in one wall 

compromises the others. 

• Taha Whānau is the wall relating to the family; however, whānau extends beyond the

boundaries of a Western nuclear family, to extended family – even to others who are

not directly blood related, indicating the importance of interconnectedness among

Māori. Taha Whānau may also be articulated as social well-being.



19 

 

• Taha Tinana is the wall relating to physical well-being; how healthy a physical body 

is, how it develops, and how one is able to care for it.  

• Taha Hinengaro is the wall designated for mental well-being; how able a person is to 

utilise coherent thinking process, or express thoughts and feelings appropriately. 

• Taha Wairua is the wall which upholds the spiritual well-being aspect to health; how a 

person is able to identify, and live in accordance, with own values and beliefs. 

Māori, autism and the NZASG. Although health models, such as Te Whare Tapa 

Whā, have been applied in many different health settings in Aotearoa to promote a customary 

worldview in a contemporary setting, little research has been done to inquire as to how 

Māori, and their whanau, view autism, how autism is accounted for in their own belief 

systems, and how customised autism support services are that are delivered, or aren’t 

delivered, to Māori (Bevan-Brown, 2004; Ministries of Health and Education, 2008, 2016). 

To complicate matters, attempting to consult pre-colonial practices of Māori, to do with 

wellbeing, is not helpful either, as disability narratives are said to be absent, with Nikora, 

Karapu, Hickey, and Te Awekotuku (2004) only able to suggest under what communal 

conditions the unwell and disabled might be well supported and valued.  

In contemporary life, the report “Māori Perspectives of Autistic Spectrum Disorder” 

delivered to the Ministry of Education by Bevan-Brown (2004) stands out as the only 

definitive point of reference on the experiences and perspective of Māori families with 

autistic children. Several concerns were raised in the report (full list in Appendix C), such as 

multiple barriers to establishing diagnosis, a widespread lack of services and resources being 

made available, a need to further upskill professionals on ASD itself, and a need to educate 

professionals on Māoritanga (Māori culture, or perspective) to improve service delivery and 

ensure that it is culturally appropriate. Many similar concerns (Appendix D) were raised in 

the subsequent national hui (conferences) that were held to provide additional insight beyond 



20 

 

the Ministerial report) into issues surrounding ASD that the Māori present felt important to 

raise (Ministries of Health and Education, 2008). The entirety of the outcomes and 

recommendations arising from the hui are incorporated into the New Zealand Autism 

Guidelines in the intent of providing a “significant foundation from which future research 

examining Māori and ASD will draw from and build on”(Ministries of Health and Education, 

2008, p. 204). To date, however, even considering the 2016 edition of the NZASG being most 

recently released, no additional research has emerged examining Māori and ASD (Ministries 

of Health and Education, 2016). 

Personal viewpoint  

Although I identify as both Māori and Pākehā, my social understanding, and position, 

is heavily weighted in the Pākehā social mainstream.  

My tertiary studies began when I was in my early thirties, and at that point the loudest 

message (some healthcare professionals disagreed with the diagnosis) our family was being 

told, was that my twin nephews were autistic. Few university classes offered me the chance 

to engage with studying autism directly, which was to be expected at an undergraduate level.  

Following my Bachelor’s degree, I spent time abroad working after getting married, 

and waiting for my wife to qualify for New Zealand Residency. I was able to utilise my 

undergraduate degree to some extent, contracting as a temporary Special Education Needs 

Assistant in special needs schools in England – before eventually accepting a full-time role at 

one school. I had the opportunity to work with autistic children across the spectrum; from 

students who were barely perceptible as having any kind of difference to a neurotypical 

student, to those who struggled to communicate and had obvious difficulties.  

Returning to New Zealand, we relocated near my family and I was able to resume my 

studies. Postgraduate courses offered far more opportunity to utilise topics of a student’s 



21 

 

choosing, so I developed a better understanding of autism related literature while working 

through my Master’s degree course work. 

Throughout this timespan, as a family, we often observed a variation in satisfaction, 

and outcomes, for different families (with autistic children) in our acquaintance; whether it 

was the schools attended, the services delivered, the support offered or lack thereof.  

But it was an incident which occurred while still abroad which caused the most 

serious reflection about why some families have different experiences than others in terms of 

service delivery. One nephew, while on his school camp, fractured a limb. This in itself was 

not unusual, as children do have accidents. What caused family to be very upset was the child 

was not in the care of his helper when he was hurt, as promised; and that the accident was not 

reported, as it ought to have been – and the child remained on camp for the duration with a 

broken arm. A subsequent internal review at the school would end the matter unsatisfactorily, 

with the Principal finding that the staff acted appropriately throughout.  

However, this school’s actions were at odds with the standards of the schools I had 

been working at abroad; once parents and staff agreed upon a plan, it was followed through 

as best as humanly possible. Furthermore, staff would always check in with parents to report 

if anything noteworthy occurred, whether it be successes and achievements, or upsets and 

accidents.  

This begged the question, what was it about schools, services, and supports, that 

different autistic children, and their families, could have very different experiences? This 

question led me to this current research, talking to families and caregivers about their 

experiences. The following chapter first examines what is presently understood regarding the 

impact, criteria and variability of ASD. Secondly, the literature on regarding individualisation 

which accounts for the variability of young autistics, and the variability between families is 

then considered before. Thirdly, the present literature of various ASD services is explored 



22 

 

within the context of an imagined service delivery lifecycle, which draws upon existing 

family systems theory. 

  



23 

 

Literature Review 

Establishing present ASD diagnostic criteria 

Although other standards may be used elsewhere to discern whether or not an 

individual is autistic, The Diagnostic and Statistical Manual of Mental Disorders, presently in 

its fifth edition (DSM-V), contains the criteria which is presently in use in Aotearoa New 

Zealand. The criteria for ASD is outlined as the following: 

[Criterion 1] Persistent deficits in social communication and social interaction 

across multiple contexts, as manifested by all of the following, currently or by history: 

• Deficits in social-emotional reciprocity, ranging, for example, from abnormal 

social approach and failure of normal back-and-forth conversation; to reduced 

sharing of interests, emotions, or affect; to failure to initiate or respond to social 

interactions. 

• Deficits in nonverbal communicative behaviours used for social interaction, 

ranging, for example, from poorly integrated verbal and nonverbal 

communication; to abnormalities in eye contact and body language or deficits in 

understanding and use of gestures; to a total lack of facial expressions and 

nonverbal communication. 

• Deficits in developing, maintaining, and understanding relationships, ranging, for 

example, from difficulties adjusting behaviour to suit various social contexts; to 

difficulties in sharing imaginative play or in making friends; to absence of interest 

in peers. 

[Criterion 2] Restricted, repetitive patterns of behaviour, interests, or activities, as 

manifested by at least two of the following, currently or by history (examples are 

illustrative, not exhaustive): 



24 

 

a) Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple 

motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic 

phrases). 

b) Insistence on sameness, inflexible adherence to routines, or ritualized patterns of 

verbal or nonverbal behaviour (e.g., extreme distress at small changes, difficulties 

with transitions, rigid thinking patterns, greeting rituals, need to take same route 

or eat same food every day). 

c) Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., 

strong attachment to or preoccupation with unusual objects, excessively 

circumscribed or perseverative interests). 

d) Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of 

the environment (e.g., apparent indifference to pain/temperature, adverse response 

to specific sounds or textures, excessive smelling or touching of objects, visual 

fascination with lights or movement). 

[Criterion 3] Symptoms must be present in the early developmental period (but 

may not become fully manifest until social demands exceed limited capacities, or may 

be masked by learned strategies in later life).  

[Criterion 4] Symptoms cause clinically significant impairment in social, 

occupational, or other important areas of current functioning. 

[Criterion 5] These disturbances are not better explained by intellectual disability 

(intellectual developmental disorder) or global developmental delay. 

(American Psychiatric Association, 2013) 

Positioning present ASD criteria academically and socially 

The status of the present ASD diagnostic criteria is perhaps best described as 

contested, both academically, and socially; particularly in the way in which Asperger’s 



25 

 

Syndrome (AS) has been removed as a separate disorder between DSM editions IV-TR, and 

V, and is presently subsumed under a broader ASD diagnosis (American Psychiatric 

Association, 2013). 

In academic circles there has been has been support for both maintaining a separate 

AS diagnosis, as well as support for an all-encompassing ASD diagnostic umbrella. Past 

efforts to differentiate between HFA and AS have been viewed as unreliable (Macintosh & 

Dissanayake, 2004; Ministries of Health and Education, 2008), citing considerable overlap in 

many symptoms, and few qualitative differences (Ministries of Health and Education, 2008). 

However, those critical of a removing AS, such as Kaland (2011) and Ghaziuddin 

(2010), have argued instead for adjusting the diagnostic criteria to allow greater 

differentiation; Kaland (2011) in particular draws attention to possible differences in 

language abilities, cognitive functions and neurobiology that warrant further investigation. 

Additionally, Planche and Lemonnier (2012) found that the cognitive profiles between those 

who were diagnosed as being High Functioning Autism (HFA), AS, or neurotypical were 

differentiated, particularly in regards to verbally mediated skills, visual-motor coordination 

and graphomotor ability. A recent review adds further support for separate diagnoses; Tsai 

(2013) evaluated 128 publications, 94 of which showed statistically significant levels, or near 

significant, differences between HFA and AS; 30 publications found no differences between 

groups; and 4 publications for both similarities and differences between groups. Confusion 

and overlap, according to Tsai (2013) and Perry (2014), may have more to do with the quality 

and the training of diagnosticians, and less than actual symptomatic overlap. Based upon the 

evidence cited, Tsai (2013) goes as far as to state the plausibility of ASD diagnostic criteria to 

run full circle over the next decade, or two, and for AS to be once again considered an 

independent disorder worthy of its own diagnosis in future editions of the DSM.  



26 

 

The ASD / AS amalgamation through the DSM-V has also been contested through the 

public domain; resistance here utilises what Carmack (2014) describes as the social identity 

argument, whereby those with AS often define themselves as a community, even a culture, 

complete with their own “monikers, beliefs and customs” (Carmack, 2014, p. 462). The most 

common self-described title used by such AS communities, is that of an ‘Aspie’, many of 

whom “want their strengths to be acknowledged and wish not to be ‘cured’” (Singh, 2011, p. 

236) 

The potential, and eventual, removal of AS from the DSM-V has been reported to be 

interpreted as threatening to Aspies in various ways (Singh, 2011; Spillers, Sensui, & Linton, 

2014). Firstly, this change may pose a threat to personal identity, as those with AS are 

reported to often fuse their diagnosis positively with their identity (Singh, 2011; Spillers et 

al., 2014). There is also reported to be a threat to the sense of community, that the change 

provides leverage for the ASD ‘cure’ movement, which is viewed as intolerant of neural 

diversity. And finally, there may also be a threat to service eligibility, if evaluated against 

non-AS criteria 

Giles (2014) documented examples located on online self-advocacy forums which 

showed that while Aspies were deeply suspicious of both the motivation and consequences of 

diagnostic merging, alternative discourses also arose. In one discourse, many Aspies were 

open to the notion of diagnostic change, assuming a newer identity of ‘Spectrumite’; in 

another, the contemporary prestige, or ‘coolness’, of being an Aspie through both media 

coverage, and other links to historic and contemporary figures, such as Albert Einstein, were 

seen as important connections worth maintaining. Of particular interest was a discourse 

which argued that the Aspie community was “now sufficiently powerful to survive 

independently of professional discourses around mental health and psychology”(Giles, 2014, 

p. 189).   



27 

 

The prevalence of ASD 

The exact prevalence of ASD, and how many lives it affects, is unknown. Estimates 

reported have ranged between 1% (Ministries of Health and Education, 2008), 1 in every 68 

(Baio, 2014), and 60-70 in every 10,000 (Fombonne, 2009). Furthermore, according to 

Fombonne (2003) in 2003,  the prevalence of ASD was shown to be three to four times higher 

than it was in the 1970s. Although such increases in prevalence have fuelled lay perspectives 

of an autism epidemic (Gernsbacher, Dawson, & Goldsmith, 2005), there is widespread 

support for the explanation that diagnostic substitution (the phenomenon whereby the label of 

a particular condition is replaced by another, causing a decrease in diagnoses in the first 

condition, and an increase in diagnoses in the second)  has played a significant role in 

increase of ASD prevalence (Bishop, Whitehouse, Watt, & Line, 2008; Coo et al., 2008; 

Gernsbacher et al., 2005; King & Bearman, 2009; Rutter, 2005). 

The impact of Autism 

The impact of autism is most often stated from the perspective of caregivers who have 

reported considerable challenges through increases in stress, challenging behaviours, social 

isolation, lack of support, fatigue, financial strain, and sibling neglect (Ludlow, Skelly, & 

Rohleder, 2012; Myers, Mackintosh, & Goin-Kochel, 2009). These are just some of the 

negatives that have been reported to occur in family life. In contrast, positive impacts of 

having an autistic child have also been reported (Myers et al., 2009). However, because 

communicatory deficits are common (Khare & Mullick, 2014), and comprehension about 

what it means to participate in research is thought to be quite difficult (Loyd, 2013), little 

research has captured the considerable challenges as experienced by those who actually have 

ASD themselves. An often cited quotation from autistic scholar, Dr Therese Joliffe (Jolliffe, 

Lakesdown, & Robinson, 1992), is thought to encapsulate the difficulties of existence on the 

spectrum: 



28 

 

reality to an autistic person is a confusing, interacting mass of events, people, places, 

sounds and sights. There seem to be no clear boundaries, order or meaning to 

anything. A large part of my life is spent trying to work out the pattern behind 

everything. Set routines, times, particular routes and rituals all help to get order into 

an unbearably chaotic life. Trying to keep everything the same reduces some of the 

terrible fear (p. 16). 

Variability between individuals on a contested spectrum.  Although there is strong 

criticism of the practice of retrospective diagnoses of ASD for historical figures such as 

Albert Einstein, Sir Isaac Newton, Andy Warhol, or Hans Christian Anderson (Goode, 2001), 

regardless of how well received (Giles, 2014), there are ample verified contemporary 

examples of those on the spectrum who are higher functioning. For example, animal scientist 

and autism advocate, Temple Grandin; creator of Pokémon, the second most successful 

game-based franchise in history, Satoshi Tajiri (Bainbridge, 2014; Mortensen, 2009); actress 

Daryl Hannah (Willingham, 2013); and successful vocalist and talent show contestant, Susan 

Boyle (Nur, 2012). Although there are also many instances of low functioning ASD, the vast 

majority of diagnoses of autism are not situated at either polarity of very-high, or very-low, 

functioning across all symptoms; rather, consensus has been reached that ASD is a highly 

heterogeneous disorder (Baranek, 2002; Dunlap & Fox, 1999; Fava et al., 2011; Fox et al., 

1997; Friedman, Warfield, & Parish, 2013; Gardiner & Iarocci, 2012; Hendricks & Wehman, 

2009; Matson & Konst, 2014; Matson, Tureck, Turygin, Beighley, & Rieske, 2012; Ministries 

of Health and Education, 2008; Moes & Frea, 2002; Roberts et al., 2011; Strauss, Mancini, 

Fava, & The SPC Group, 2013; Wilczynski, Menousek, Hunter, & Mudgal, 2007), in that it 

covers a high degree of variability for social, communicative, and intellectual challenges 

between those diagnosed. Furthermore, such variability of challenges also signifies variability 

of lived experience, and also variability of personal impact. 



29 

 

Variability in families. Families, arguably the most important support unit that any 

child or young person on the spectrum will have, are also widely acknowledged as being 

heterogeneous (Dunlap & Fox, 1999; Fox et al., 2002; Gardiner & Iarocci, 2012; Ministries 

of Health and Education, 2008; Moes & Frea, 2002). Differences in families vary in many 

aspects, such as ethnicity, culture, values, configuration and functioning of its members (or as 

a unit), and socioeconomic status. As Dunlap and Fox (1999) note, each family has their own, 

“strengths, resources and challenges” (Dunlap & Fox, 1999, p. 49), each of which can be 

influenced by, or can be influential when, a family member is autistic. Furthermore, as with 

autistic individuals, no two families will experience the impact of diagnosis and life with an 

autistic family member in the exact same way. 

Service individualisation 

Given the individual and familial variability, there is also widespread acceptance in 

the literature that services need to be individualised (Baranek, 2002; Billstedt et al., 2011; 

Dunlap & Fox, 1999; Fava et al., 2012; Fox et al., 2002; Fox et al., 1997; Gardiner & Iarocci, 

2012; Greenspan & Wieder, 1999; Hendricks & Wehman, 2009; Horlin et al., 2014; 

Ministries of Health and Education, 2008; Moes & Frea, 2002; Odom et al., 2012; Oono et 

al., 2013; Roberts et al., 2011; Stahmer, Schreibman, & Cunningham, 2011; Vismara, 

Colombi, & Rogers, 2009; Wilczynski et al., 2007; Woods & Wetherby, 2003). Service 

individualisation, which is also sometimes referred to as contextualisation (Gardiner & 

Iarocci, 2012; Moes & Frea, 2002), or family-centeredness (Fox et al., 2002), refers to taking 

into consideration the preferences and needs of the young person with ASD (while also taking 

into consideration the families’ needs, knowledge, value systems, and cultural identity), when 

implementing services. It is broadly theorised that the more individualised a support service 

is, the more efficacious a support service is likely to be towards a favourable outcome. 

However, as most of the literature features the narratives from parents, particularly mothers, 



30 

 

the voices of autistic young people are missing from the broader discourse of how 

individualised services are, and further, what even constitutes individualisation. 

Operationalising individualisation in autism related research.  Despite widespread 

acceptance of the need for the individualisation of services, operationalising individualisation 

in terms of autism service delivery has not been the subject of much discussion in the 

literature. This raises concerns regarding how successful efforts are to match the uniqueness 

of a child, and their family, and what terms of reference one might use to quantify success, or 

failure. Although not explicitly investigating individualisation, Bromley, Hare, Davison, and 

Emerson (2004) have demonstrated how researchers might look beyond mere uptake as a 

way of quantifying the suitability of support services, as they also measured service 

awareness, accessibility, appropriateness and sufficiency in using a modified version of the 

Client Service Receipt Inventory.   

Individualisation over a lifespan.  Relationships between an individual, their 

families, service characteristics, and broader sociocultural context are thought to overlap and 

interact with each other (Gardiner & Iarocci, 2012); thus, service receivers may opt in or out 

of services due to multiple dynamic variables. Furthermore, service policy and delivery may 

also be viewed as a ‘wicked’ problem, as service providers, family dynamics, the child’s 

needs, or the suitability of the service may also shift considerably over time (Stace, 2011). 

Additional tensions arise, from a service delivery point of view, as healthcare providers in 

Aotearoa New Zealand are conflicted between “treating people as holistic beings, and 

[operating within] tightly capped budgets” (Stace, 2011, p. 154). Thus, in many instances the 

question is not only a case of how well fashioned a service is to meet specific needs, but also 

establishing that a particular kind of support service even exists, given budget constraints. 

The author was not able to locate any research which gave caregivers the opportunity 

to report on awareness, uptake and the extent of individualisation over broad range of 



31 

 

professionally delivered support services, which were offered over a young lifespan: from 

diagnosis at 2-3 years of age, to transitioning into adulthood. However, coverage on the 

importance of individualisation is extensively documented across individual studies, which 

address specific support services. 

Since the literature is lacking in regards to research across multiple domains, over a 

lifespan, the following sections are structured by utilising a reimagined version of the 

expanded life cycle (see Figure 2.), as proposed by McGoldrick et al. (1999). Changes made 

to the original model include changes to the theorised vertical stressors, which arguably better 

reflect the challenges that ASD family systems experience; as well as an imagined integration 

of services across systemic levels, and over time, to assist the family with both vertical and 

horizontal stressors (Gladding, 2010; McGoldrick et al., 1999). 

Diagnosis – the beginning of any service delivery over a lifespan 

The primary event in the ASD journey for young people and families, throughout the 

literature, is the confirmation of a diagnosis by an appropriate clinical, educational, or 

paediatric professional. Although there are many screening procedures in place for different 

health conditions, according to the NZASG (Ministries of Health and Education, 2008), it is 

considered appropriate in Aotearoa New Zealand, that caregivers and professionals with 

knowledge of normal development can identify ASD and raise concerns. While identification 

by a caregiver, or professional, is useful in terms of raising a flag, it achieves little without 

the next step in the process, which is the timely access to the appropriate referral and 

subsequent diagnostic appointment (Ministries of Health and Education, 2008).  

 



32 

 

Delays and discrepancies in timely diagnosis. Having a diagnosis confirmed for a 

child / young person in a timely manner is considered critical; clinical confirmation may 

change a great deal about how a child / young person’s life is lived in combination with 

family dynamics, such as the need for information, advice, services, and funding. Prompt 

diagnosis is associated with better intervention outcomes for child and family (Ministries of 

Figure 2. Expanded ASD family life cycle. Adapted from McGoldrick, Carter, and Garcia-Preto (1999) and Gladding (2010) 



33 

 

Health and Education, 2008), and may also lower costs for both families (Peters-Scheffer, 

Didden, Korzilius, & Matson, 2012), and the state (Horlin et al., 2014), whereas delays are 

seen to be associated with worse outcomes, and increased costs. Lengthy delays for diagnoses 

have been attributed to a variety of factors.  

Ethnic discrepancies in securing diagnosis. Recent literature in the United States has 

highlighted delays and discrepancies in diagnostic timelines between White Americans and 

other ethnic groups. Magaña, Lopez, Aguinaga, and Morton (2013) found disparities in 

access to diagnosis, and eventual treatment (on average, almost a year’s difference) between 

Latino and non-Latino White children. While Mandell et al. (2009) similarly reported 

significant disparities between the timeliness of the diagnosis of White American children, 

compared to Black American and Hispanic American children.  

Systemic concerns in securing diagnosis. Systemic factors were also reported to be 

the cause of delays. A review of studies conducted on autism related issues in Brazil 

highlights a common theme: the systematic postponing of diagnosis for many families in 

Brazil, as families endured a succession of multiple health professionals to secure diagnosis 

(Gomes, Lima, Bueno, Araújo, & Souza, 2014). Another study, based in China, by  Song, 

Giannotti, and Reichow (2013) illustrated how systemic interactions between limited 

providers, and receivers with their own strategies and beliefs, both contributed towards 

lengthy delays. 

Diagnosis delay in Aotearoa New Zealand. Although a look abroad might illustrate 

disparities between ethnicities, and also systemic issues, being influential in delaying 

diagnoses, the state of affairs in Aotearoa New Zealand does not appear to be much different 

(Ministries of Health and Education, 2008). Addressing known practices and services, the 

NZASG states that there is currently inequitable and inconsistent access to assessment 

(Ministries of Health and Education, 2008), although it is not understood why. 



34 

 

Providing support services following diagnosis. According to Dunlap and Fox 

(1999) the effects of diagnosis on a family must be considered from a lifestyle perspective 

that potentially has a profound impact on the family as a system. Several negative themes are 

often reported to impact a family following diagnosis, such as, confusion, financial hardship, 

a sense of loss, uncertainty about the future, a sense of shock, anger, guilt (self-blaming), 

depression, disagreement, and sadness (Banach, Iudice, Conway, & Couse, 2010; Dunlap & 

Fox, 1999) On the other hand, however, some families reported positive themes, such as 

relief, affirmation and increased closeness; as diagnosis can facilitate sense-making in the 

present for families, after an extended period of struggle (Banach et al., 2010; Ministries of 

Health and Education, 2008). This extends what is known regarding family heterogeneity to 

also include event perception; aside from all other characteristics which may categorise, or 

describe a family, two seemingly similar families may react to diagnosis in very different 

ways and consequently require an individualised response which will account for such 

variance.  

Early Intensive Behavioural Interventions (EIBI). The type of post-diagnosis 

support service which appears to receive the most coverage in literature, are EIBIs for the 

diagnosed child / young person. The gains of behavioural interventions based upon the 

principles of Applied Behavioural Analysis (ABA) have been well validated empirically 

(Strauss et al., 2013); however the importance of individualisation of EIBI, and its contextual 

application in non-clinical settings where problem behaviour may occur has not always been 

understood. 

A comprehensive review of meta-analyses between 2009 and 2011 emphasises the 

effectiveness of EIBI, and the role that individualisation plays (Strauss et al., 2013). Strauss 

et al. (2013) show that EIBI leads generally to positive, medium to large effects, for the main 

three outcome measures, namely: intellectual functioning, language skills, and adaptive 



35 

 

behaviours (Strauss et al., 2013). Although many EIBI programs and studies cited were 

reported to vary slightly in their approaches, the review’s inclusion criteria required that 

studies illustrated the individualisation of treatment planning. In their summary of findings, 

the review team also concluded that the individualisation of a child’s treatment planning was 

one of three key active factors which determined EIBI effectiveness (Strauss et al., 2013). A 

subsequent study by two of the lead authors of the review, Fava and Strauss (2014), further 

highlighted the importance of understanding the pre-treatment child and the characteristics of 

the family ecology to elevate treatment efficacy. 

Parental support groups. Parental support groups, facilitated by healthcare 

professionals, are another common avenue of support for concerns arising in family life; yet, 

little research has been conducted to study the usefulness of parental support groups for those 

with children on the spectrum, especially post-diagnosis (Banach et al., 2010). Banach et al. 

(2010) found statistically significant increases in the measures of Family Empowerment, 

Service System Empowerment, and Community/Political Empowerment, for ASD parent 

participants. This demonstrates that parental groups could be beneficial for those with ASD 

children. In contrast, Papageorgiou and Kalyva (2010) found that self-reported needs and 

expectations in parental groups of autistic children differed significantly according to the 

gender of parent, the education of the parent, the age of the child, and the gender of the child. 

These results suggest a cautionary note to the effectiveness of parental groups which do not 

take into consideration the personal variances between their members. 

The extent to which parental support groups are utilised for caregivers of autistic 

children, in Aotearoa New Zealand is unknown, as is also the perceived usefulness of them 

from a service user perspective. 

Providing information following diagnosis.  Providing accurate information 

following diagnosis (Ministries of Health and Education, 2008), is considered to be a priority, 



36 

 

as it equips families with the best information available upon which decisions can be made, 

and upon which services may be provided. Reliance upon popular media, to convey accurate 

information, can be hazardous. Smith (2008) outlines how giving equal coverage of opposing 

views regarding ASD in different media platforms can equate to the perception of equal 

credence, even though the evidence on one side is deficient. 

Information about autism, following diagnosis, can be accessed from a multitude of 

sources; Magaña et al. (2013) found that the overwhelming majority of parents sought access 

from several sources (such as: friends, family, other parents, support groups, educational 

professional, healthcare professional, books and magazines, and the internet). Additionally, 

most sources were utilised in significantly different ways between ethnic groups. In contrast, 

Twoy, Connolly, and Novak (2007) found that friends, and similar families, (other families 

with members with ASD) were utilised in different ways. 68% of the 55 parent respondents 

utilised friends for generalised support, whereas 93% of respondents utilised similar families 

for information and advice relating to living with an autistic child (compared to 80% who 

utilised professionals for advice). 

The process of self-education on the internet has also been shown to be problematic, 

not only because of the inaccuracy of a great deal of information on the internet regarding 

autism, but also the need for parents to learn what can be described as a new language, or 

skills. Thematic analysis by Moodie-Dyer, Joyce, Anderson-Butcher, and Hoffman (2014) 

revealed that many of the parents in their study had difficulty identifying key online 

resources, as particular “code words”(Moodie-Dyer et al., 2014, p. 351) were required to 

achieve desirable results.  

An alternative strategy to providing information, is to create information packs that 

are freely distributed to parents. However, there is little coverage in the literature of pre-

constructed information resources which parents are able to utilise post-diagnosis. One such 



37 

 

resource, published by Autism Speaks in the United States, is called the First 100 Days Kit: A 

tool to assist families in getting the critical information they need in the first 100 days after 

an autism diagnosis. While the First 100 Days Kit was perceived as being one of the most 

helpful aspects of a support group intervention piloted by Banach et al. (2010), there is broad 

criticism of Autism Speaks as an organisation; accusations from other advocacy groups 

include, non-inclusiveness of people on the spectrum, and also fear orientated rhetoric about 

what life entails for those on the spectrum, and their families (Autistic Advocacy Network, 

2014). 

Education 

Education is an important aspect of life for children and young people, which assists 

them in achieving their potential, and enable them to be able to participate fully in 

meaningful activity, or employment, later in life – this goal is no different for children on the 

spectrum. However, for young people on the spectrum, additional help, or consideration, 

which addresses their unique needs, is sometimes needed to enable them to reach their 

potential. 

Individualised Education Programmes (IEPs). A common approach to attending to 

a student’s individual needs is through an IEP, which is a comprehensive plan that provides a 

template of actions and steps designed to enable educators, caregivers, and student alike to 

achieve personalised goals. Wilczynski et al. (2007) argue that while this process is well 

known, even commonplace, for many education professionals (who are accustomed to 

drawing upon feedback from parents, consultants, and advocates), the process is often 

difficult when the IEP is being designed for someone with ASD, because of the heterogeneity 

of the disorder. Wilczynski et al. (2007) argue that the heterogeneity of ASD may prove 

difficult for three reasons. Firstly, mental health and education professionals may not have 

experience in serving young people who have comorbid conditions, such as anxiety, or 



38 

 

depression. Secondly, IEPs may be difficult to develop well as different children / young 

people are likely to exhibit high variability in symptoms under different conditions, 

interacting with different people. Thirdly, IEPs are difficult to develop well, as there has not 

been adequate research on developing IEPs with autistic children; consequently, there are no 

clear guidelines emerging to govern how practitioners construct an IEP. As a result of a lack 

of research into IEPs and autism, professionals must draw upon clinical judgement, 

knowledge of variables in the life of the individual, and what is known of the unique 

strengths and challenges of an individual, to make educated decisions how to best implement 

a plan (Ministries of Health and Education, 2008; Wilczynski et al., 2007). 

Individualised behavioural plans.  The NZASG considers behavioural challenges in 

an educational setting from the perspective of both the child, and caregivers or educators. 

From the perspective of the child/young person, parents and educators “demonstrate problem 

behaviours by putting a child in situations which they find difficult” (Ministries of Health and 

Education, 2008, p. 119). This may include, making demands which are difficult for a child to 

comprehend; communicating in ways that are difficult; expecting participation in activities 

that hold no interest for the child, or the child has no skill in performing; or limited exposure 

to interests the child does have. From a parent, or educator’s perspective, problem behaviour 

is exhibited through a child’s non-compliance, disruption, and physical outbursts. If such 

behaviours persist, the child is at risk of exclusion (Ministries of Health and Education, 

2008). 

In attempts to avoid exclusion, the focus in behavioural interventions has shifted in 

recent years, from eliminating a behaviour altogether, to positive individualised behavioural 

support, which seeks to understanding the functionality of what any given behaviour achieves 

for each individual child in their environment (Ministries of Health and Education, 2008). 

Positive behavioural plans should: 



39 

 

▪ consider all problem behaviour performed by a child 

▪ be driven by functional assessment outcomes 

▪ be applied across all (or most) of a child’s day 

▪ incorporate a number of intervention procedures 

▪ fit the context where they are to be implemented 

▪ emphasise the teaching of positive alternative skills  

(Ministries of Health and Education, 2008, p. 123) 

Generalisation of behavioural management. Consistency across settings is one of the 

fundamental principles of applied behavioural analysis; if a behavioural intervention is 

applied consistently at school, at play / work, and especially at home, the chances of 

generalisation of desired behavioural changes become greater, as well as the odds of desired 

changes becoming permanent (Ministries of Health and Education, 2008). To date, there has 

been only one study to perform an in depth meta-analysis of the difference in outcomes for 

EIBI interventions; Strauss et al. (2013) found that studies which included staff-based 

instruction in a centre setting, as well as parental skills generalisation in the home 

environment, had the highest effect sizes in initial language skills, adaptive behaviours, and 

intellectual functioning outcomes.  

Sensorimotor needs. Most autistic children are said to experience sensory and motor 

challenges “at some point in their development” (Ministries of Health and Education, 2008, 

p. 108). Under-reaction, or over-reaction, to stimuli can not only be distressing to the child, 

but can also interfere with their participation in a learning environment, yet the heterogeneous 

nature of ASD dictates to what extent for each child (Ministries of Health and Education, 

2008). A major review of sensory-motor interventions found that treatments sometimes have 

“questionable rationale” (Baranek, 2002, p. 415) for their use with children with autism e.g., 

sensorimotor patterning is based upon neurological theory which has been largely disproven. 



40 

 

Many other studies reviewed failed to establish connections between changes in a 

dysfunctional sensory mechanism, and changes in functional behaviour (Baranek, 2002). In 

the absence of data of studies conducted in Aotearoa New Zealand, good practice (as 

suggested in the NZASG) is that interventions for the child are individualised by an 

appropriate professional who has expertise in sensorimotor and ASD specific education, and 

can apply the necessary clinical judgement (Ministries of Health and Education, 2008).  

Environmental changes. While schools are tasked with making small environmental 

and task modifications to assist students with ASD, families may need assistance in making 

modifications at home that balances the child/ young person’s needs with the needs of the 

entire family (Ministries of Health and Education, 2008); Research is yet to emerge which 

investigates how effective attempts are to strike such a balance, let alone in Aotearoa New 

Zealand. 

School as a supportive environment. According to the NZASG, the “support of the 

whole school community is a key factor in the successful education of a child or young 

person with ASD”(Ministries of Health and Education, 2008, p. 127). Any school community 

features the complex interaction between multiple parties, such as school management, 

school teachers, school students (autistic or not), and parents; each with their own role to play 

to ensure that school is a supportive environment. The research available, in regard to 

supportive schools, is limited to reporting on attempts at bullying reduction between students, 

and parental views and expectations of school inclusivity (Ministries of Health and 

Education, 2008; Owen-DeSchryver, Carr, Cale, & Blakeley-Smith, 2008). 

According to the NZASG, to increase the quality of relationships and interactions 

among students, and to reduce the likelihood of exclusion and bullying, peers of children with 

ASD need information and support (Ministries of Health and Education, 2008). However, 

very little research has investigated how information and support might increase inclusion 



41 

 

amongst neurotypical peers and reduce bullying. One pilot study conducted with three 

children with ASD and their peers, investigated how well a training program would assist 

initiations and interactions for both parties. Phases of the intervention included the reading 

and discussing of a children’s book about an inclusive classroom with an autistic student; a 

discussion of the ASD participant’s strengths, and the preferences of a classmate with ASD 

(discussing their own strengths, and weaknesses posed as “things they were still learning to 

do” (Owen-DeSchryver et al., 2008, p. 19); and a guided discussion which considered several 

ways in which peers might interact with those with ASD. The results generally showed that 

there were increases in initiations and responses between both parties. An unexpected 

outcome reported showed the possibility of the effect of interventions on others in the school 

environment, where initiations and responses increased between those with ASD and those 

not participating in the intervention (Owen-DeSchryver et al., 2008). It is unknown how often 

autistic children are bullied in schools in Aotearoa New Zealand, and what practices are in 

use to overcome it. 

The interplay between adults can be equally as complex as the interplay among 

students in establishing a supportive environment for unique individuals on the spectrum. A 

major review of parental views into what constitutes an inclusive school environment 

highlighted a strong theme throughout the literature; that teachers are viewed as both the 

main facilitators, and main inhibitors of inclusive schools (Falkmer, Anderson, Joosten, & 

Falkmer, 2015). However, as the review also noted, it is unfair to state that teachers carry sole 

responsibility for school inclusiveness, even if they are framed the ‘face’ of school 

inclusiveness (Falkmer et al., 2015). Similarly, the NZASG states that teachers do need to 

have a positive attitude towards those on the spectrum; however, to understand and cater for 

the unique needs of children with ASD, they themselves need access to the appropriate 



42 

 

training, and skilled professional support, which ought to be facilitated at a management level 

(Ministries of Health and Education, 2008).  

Personal fulfilment – living in the community 

Autistic people, even those with considerable social challenges, exist as social beings 

that need avenues through which to be engaged in meaningful activity, pursue interests that 

may lead to work, or develop rewarding acquaintances, friendships, or companionships, if 

desired. 

Recreation and leisure. There is much evidence to suggest that recreation and leisure 

can be very beneficial to autistic people, especially if it is individualised to their needs and 

preferences. Ending in 2004, Project Autism, a major collaboration over three years in the 

United States between two nationally recognised programmes - the Department of Recreation 

and Leisure at the University of North Carolina, and the Department of Psychiatry from 

Division TEACCH - studied the support required to meet the recreation and leisure needs of 

those on the spectrum (Ministries of Health and Education, 2008). Among the findings were 

18 benefits for those with ASD (including children and young people), which ranged from 

functional benefits; such as the expanding of interests, enhancing of communication skills, 

improvement of cognitive functioning; to the personal basic benefits of the enjoyment that 

comes from mastery, or the relaxation associated with an activity (Ministries of Health and 

Education, 2008). Importantly, the need to individualise was evident in the recommendations 

arising from Project Autism, as it produced a manual which provides information to assist 

getting someone on the spectrum involved with activities of choice, where an 

individual’s ”goals and wishes” (Ministries of Health and Education, 2008, p. 174), strengths, 

challenges, interests and satisfaction are all considered. 

While not focusing specifically on autistic children and young people, a more recent 

study has shown the long term benefits for those with ASD who have effective avenues of 



43 

 

recreation and leisure including increases in independence, competence, satisfaction and 

social interaction (García-Villamisar & Dattilo, 2010).  

Personal interests. Personal interests are said to potentially serve both positive, and 

negative functions, for people with ASD. During his address to the Autism New Zealand 

Conference in 2004, Tony Attwood, an internationally renowned expert on autism, observed 

that the special personal interests of some on the spectrum can be considered as a barrier to 

participating in recreation and leisure, yet also may serve as positive functions (Ministries of 

Health and Education, 2008). On one hand, special interests may become problematic 

towards optimal family functioning, as they may lend towards being obsessive / compulsive, 

and also may require a sizeable financial commitment to maintain. Yet, on the other hand, 

personal interests may provide personal enjoyment, relief of stress and anxiety, be a means by 

which other learning can be initiated, an avenue of increasing social networks, and become a 

possible avenue worth pursuing towards meaningful employment, or a career (Ministries of 

Health and Education, 2008). The connections between personal interests and eventual 

careers has not yet received the same depth of coverage as other forms of service delivery. 

According to the NZASG, the heterogeneity of ASD, and the particular interests each child / 

young person has, means that the correct support in managing interests, while promoting 

interests which enable positive functions, is said to best supported by sound professional 

judgement – yet how professional judgement is perceived from a service user perspective is 

unknown. 

Relationship support.  Friendship, for neurotypical children, has been shown to 

promote positive gains for children socially, cognitively, and emotionally (Petrina, Carter, & 

Stephenson, 2014). Making, and maintaining friendship connections with others may be 

incredibly challenging for an individual on the spectrum, given that many individuals on the 

spectrum face challenges with social communication or interaction; may have difficulties 



44 

 

regulating emotions; or have repetitive behaviours, or fixed interests that may become 

obstacles in gaining the same friendships, and ultimately the same benefits, as neurotypical 

children (Petrina et al., 2014). A major review of the literature of the nature of relationships 

that children / young people with ASD had, raised several issues about how research was 

being conducted in this area of interest. In particular, Petrina et al. (2014) noted that there was 

a lack of diversity in students, as many studies included only higher functioning (‘Aspie’) 

participants. Despite a tendency for researchers to include only participants who are 

considered higher functioning, Calder, Hill, and Pellicano (2013) have recently found that 

there is variability of relationship satisfaction in children on the spectrum, but overall, there 

was lower reported relationship satisfaction than neurotypical children. They reported that 

was “related to neither children’s cognitive ability nor their theory of mind ability” (Calder et 

al., 2013, p. 297).  While such findings offer further evidence of the unique nature of 

individuals on the spectrum through their unique sense of satisfaction in relationships, what 

supports are on offer in Aotearoa New Zealand, and how suitable they are, is currently 

unknown.  

Close relationship support. Some young people on the spectrum do have intimate, 

including sexual, relationships; later in life, people with ASD may have life companions, or 

get married (Ministries of Health and Education, 2008). However, there is a lack of research 

in this area on either side of the relationship; for partners who are on the spectrum, and those 

who are not. Furthermore, no academic literature was found which investigated relationships 

where both partners were autistic.  

Just one article, which relies upon the clinical experiences of the author, offers 

suggestions for how therapists might attempt to attend to the relationship issues that are most 

likely to occur when one party has Asperger’s (Aston, 2012). Best practice, according to the 

NZASG, is said to be the application of sound clinical judgement utilising ASD specific 



45 

 

knowledge (Ministries of Health and Education, 2008) However, little is known about how 

successful, and how individualised counselling services are. 

Family life 

As mentioned previously, each family has their own strengths and limitations, 

resources and constraints, and modes of living which must be considered (Dunlap & Fox, 

1999). Additionally, as individuals, each member of a family, whether they be a diagnosed or 

undiagnosed child, or a parent, have their own individual needs and concerns which must also 

be considered, alongside the needs of the collective, if the long-term health of a family is to 

be optimised. 

Financial issues for families. A child/young person having Autism can mean many 

additional costs for some families, in the form of medications, treatments, interventions and 

complications with care options. For families who might struggle to make ends meet under 

normal circumstances, any such additional costs can be potentially devastating (Ministries of 

Health and Education, 2008).  

Loss of provider employment. Although it is a commonly held view that ASD can be 

costly, in terms of increased family expenditure, the most common reoccurring theme relating 

to family finances in the literature is the potential loss of income from employment for one or 

more family members, particularly parents or caregivers (Ministries of Health and Education, 

2008). One Western Australian study examining the familial financial cost of ASD, calculated 

that the median cost for families to be $34,900 Australian Dollars annually; approximately 

90% ($29,200) of this sum is attributed towards loss of income from employment for a parent 

(Horlin et al., 2014).  In the United States, Myers et al. (2009) also identified shifts in 

employment as one of 15 negative themes arising from a qualitative study which asked 

parents how ASD children in their care affected their lives, and their families’ lives.  



46 

 

However, the relationship between having a diagnosed child, and the potential loss in 

employment (and subsequent income), is argued to be complex, depending upon unique 

family dynamics (Myers et al., 2009). For example, while Myers et al. (2009) found that it 

was typical for a mother to leave work to care for a child, a father might also work additional 

hours, or even additional jobs to attempt to make up the financial shortfall. Similarly, Houser, 

McCarthy, Lawer, and Mandell (2014) found that the choices that couples made about who 

might stay at home to care for children depended on two areas of concern; which parent was 

able to make the most money, and which parent was the most suitable to a caregiving role. 

Unfortunately, married couples, and other two parent partnerships, have been the only family 

configurations investigated regarding loss of income, with single parents and other kinds of 

primary caregivers absent from the literature. 



47 

 

Supporting parents to remain in employment. The NZASG recommends that flexible 

community support services, as well as employer supports, need to be in place to support 

parents to enable them to remain in work, as well as care for their children (Ministries of 

Health and Education, 2008). Yet, there are examples in the literature of the trouble parents 

have in negotiating the appropriate supports for their unique family situation. In one study 

investigating enabling factors for parents to remain content in the work force, parents 

reported three key barriers to achieving a sustainable work / home life fits, namely: childcare 

coordination concerns; after-school childcare quality and concerns; and performance pressure 

in managing many parental concerns, made increasingly complex by a diagnosis of a child 

(Houser et al., 2014). Similarly, a study conducted by Haney (2012) found that the majority 

of parents who took part reported that they had a desire to have such after school care 

services available to them, yet had faced difficulty in placement for their children because the 

autistic symptoms that  their children displayed were unacceptable to private day care, or 

because of concerns about the quality of the services available to them.  

While addressing supports to keep caregivers in employment, both studies also 

demonstrate how the usual challenges of parenting are might be amplified by children with 

unique needs. 

Speech / communication management. As with other symptoms associated with 

ASD, communication deficits can vary considerably; from the profound difficulties to 

communicate in ways in which others can comprehend, to barely noticeable.  

In order to make progress, the NZASG states that children / young people with ASD 

should have 25 hours of “developmentally appropriate”(Ministries of Health and Education, 

2008, p. 93) interactions per week across different settings, including the family home. 

However, the unique needs of the child, and the unique needs and preferences of the family, 

should be taken into consideration when decisions are made about what forms of 



48 

 

engagement, in which social domains, and at what intensity and frequency (Ministries of 

Health and Education, 2008).  

For some families, parental training to facilitate increases in communication in the 

home, is an appropriate avenue to pursue. Parental Training (PT) interventions which focus 

upon, and address developmental deficiencies, while teaching children in naturalised settings, 

have been described as more favourable options due to learning situations being low-demand 

for both parent and child (Elder, Valcante, Yarandi, White, & Elder, 2005). Yet, even with PT 

as an appropriate option, the literature supports the need to consider the individual needs of 

the child and the family. 

Much research on PT has focused upon mother-child interactions, as fathers have 

been positioned both socially and academically as secondary child trainers at home (Elder et 

al., 2005). Fathers are also said to have language skills and interaction styles that are unique 

(Flippin & Crais, 2011), yet such differences are not well researched, or utilised, as fathers 

seldom participate in ASD orientated research. 

Physical therapy. As with the sensorimotor discussion in an educational setting 

(mentioned previously in an educational setting), the NZASG argues that physical therapeutic 

intervention is best judged to meet individual need, by professionals who have expertise in 

both motor problems, and in ASD, rather than the indiscriminate use of any sensorimotor 

intervention. While the role of physical therapists features regularly throughout the NZASG 

(Ministries of Health and Education, 2008), elsewhere, concerns have been raised over the 

lack of representation of physical therapists in interdisciplinary teams that produce ongoing 

formulation for the appropriate services for a young person on the spectrum (Mieres, Kirby, 

Armstrong, Murphy, & Grossman, 2012). 

Emergency support. Structure and predictability can be extremely important to many 

on the spectrum, yet often emergencies in family life, such as an accident, the sickness or 



49 

 

even a death in the family, can negate both of these (Ministries of Health and Education, 

2008). Emergency events can affect the structures, routines, and habits that a person on the 

spectrum would normally be content with. Additional strain can also be placed upon those 

with ASD, by the introduction of unfamiliar people, and surroundings. 

Little research has been conducted to investigate emergency support for those with 

autism (let alone in Aotearoa New Zealand), and what literature exists has focused solely 

upon a medical setting. However, two recommendations that do exist reflect the need to take 

into consideration an autistic child’s uniqueness. Firstly, where a child is outside their normal 

environment, the environment they enter needs to be structured, predictable, and offer the 

same kind of supports as they are accustomed to having – particularly in care placement 

(Ministries of Health and Education, 2008). Secondly, when a child is placed in an emergency 

support setting, then the appropriate staff who care for, and interact with, the child should 

have the appropriate training as to how best provide support to someone with ASD 

(McGonigle et al., 2014; Ministries of Health and Education, 2008).  

Medical consultation. Not all healthcare practitioners, including doctors, have the 

expertise which might be vital for some on the spectrum, particularly if the ASD related 

symptoms an individual has are severe. While no research was found which covers medical 

consultation in a General Practitioners clinic, for general illness, one study (Lake, Milovanov, 

Sawyer, & Lunsky, 2015) was located which focused on the consultation process that took 

place for the prescription of medication, and for the review of medication.  

The extent of the use of medication, is unknown, however there is broad coverage of 

the benefits of the use of some kinds of medications to alleviate particular symptoms 

(Ministries of Health and Education, 2008), especially for those on the spectrum with co-

morbid disorders, such as anxiety disorders. Lake et al. (2015) reported common themes 

among in their small parental dyad sample (N =7) regarding medication consultations and 



50 

 

reviews (Lake et al., 2015). Firstly, most parental couples felt that prescribing healthcare 

practitioners that they dealt with had a lack of expertise, with three of the couples specifically 

mentioning a concern about a lack of autism spectrum related expertise. Secondly, most 

couples reported a lack of support and assistance around the prescription and a review of the 

medication. Thirdly, several parents raised a concern on the poor standard of communication, 

as their concerns, suggestions and opinions were given little consideration. Fourthly, four of 

seven parental couples reported that their prescribing healthcare practitioners were reluctant 

to take responsibility for the monitoring and ensuring best use of medication; in many cases it 

was left to “parents to monitor medication effects, adjust dosages” (Lake et al., 2015, p. 169) 

and report any health concerns. Being tasked such responsibilities, in essence, meant that 

parents assumed the role of a health professional. 

Support for other family members. Research has focussed a great deal on parents 

and caregivers; however, each member in a family has their own needs, concerns, and desires 

which must be considered in a complete family treatment plan. 

Sibling support. Having an autistic sibling may often mean facing particular demands 

that those without autistic siblings might not normally be placed under. Contradictory results 

have appeared throughout the literature, and have been well documented and reviewed (cf. 

Ministries of Health and Education, 2008; O’Brien, Duffy, & Nicholl, 2009). Some studies 

report that a sibling of a diagnosed child is more likely to experience elevated stress levels. 

However, others report there are no significant differences at all and that (despite potential 

additional demands), having a brother or sister on the spectrum does not necessarily predict a 

problematic relationship between siblings, or a threat to the well-being of a neurotypical child 

/ young person (O’Brien et al., 2009). Further research is needed to identify which kinds of 

formal / informal social supports are needed, or which kinds of information are most useful in 

enhancing unique sibling relationship.  



51 

 

Companionship support.  Although it is important to support all relationships in a 

family, perhaps the relationship which can be most influential is the one between adults, for 

example, a spousal relationship. The consequences of the dissolution of parental 

companionships, particularly marriage, can be devastating for any family. However, are 

parents of those with ASD at a higher risk of divorce/breakup than parents of neurotypical 

children? Both parents and practitioners often perceive a higher risk of divorce in parents of 

children with ASD, perhaps due an often-cited statement in the media which asserts that 

divorce rates for parents of children with ASD is as high as 80% (Freedman, Kalb, Zablotsky, 

& Stuart, 2012; Saini et al., 2015). However, as Saini et al. (2015) observes, the empirical 

evidence to support the perception of such high rates of divorce is scant.  

One study in the United States did report higher divorce rates in ASD families, but not 

to the extent of commonly held beliefs. Hartley et al. (2010), compared the timing and 

occurrence of divorce in a sample of 391 marriages which had children with ASD, against a 

matched representative sample of marriages, which had children without disabilities. Parents 

of children with ASD were found to have a higher rate of divorce; 23.5%, compared to 

13.8%. Closer analysis revealed a consistently higher divorce rate for ASD parents over 

childhood, adolescence, young adulthood, whereas the divorce rates in the comparison group 

of non-ASD parents were shown to ease after childhood.  

On the contrary, other research has questioned whether having a child with ASD had 

any bearing on divorce rate at all. A population based study in the United States identified 

913 participants who were parents of children with ASD; after controlling for relevant 

covariates, multivariate analyses found that there was no evidence to suggest that a child with 

ASD was more likely to live without both his/her biological or adoptive parents (Freedman et 

al., 2012). Similarly, in a French study, over a 10-year period, the separation / divorce rate of 

parents with ASD children was reported to have reached 25.2% (Baeza-Velasco, Michelon, 



52 

 

Rattaz, Pernon, & Baghdadli, 2013). Although the study lacked a control, French census data 

estimated divorces at 28%, which was viewed as not being all that different from divorce rate 

of the research groups. Baeza-Velasco et al. (2013) also reported that the divorce rates 

remained stable over the duration of the study, contradicting the age related differences as 

reported by Hartley et al. (2010). 

Although evidence is ambivalent as to whether ASD diagnoses are risk factors in 

marital breakdowns, there is a wealth of data which illustrates increased perceived stress 

levels for parents of children with ASD (Freedman et al., 2012). Lower martial satisfaction, 

lower marital adjustment, or inter-parental stress have also been reported often (Baker-Ericzn, 

Brookman-Frazee, & Stahmer, 2005; Gau et al., 2012; Higgins, Bailey, & Pearce, 2005). 

Similarly, parental stress, or child related stress has also received much coverage in the 

literature (Baker-Ericzn et al., 2005; Freedman et al., 2012; Gau et al., 2012; Jones, Totsika, 

Hastings, & Petalas, 2013). Freedman et al. (2012) suggest that it would appear as though 

marital companionships which have children with ASD do generally stay together; yet many 

live with increased stress levels compared to families with neurotypical members.   

The need to individualise companionship support services can be illustrated by firstly 

considering research into both gender differences in marital satisfaction of parents of autistic 

children, and also research into parental differences. Emerging literature points to a 

correlation between parental stress or satisfaction and marital quality or satisfaction (Benson 

& Kersh, 2011; Brobst, Clopton, & Hendrick, 2009; Gau et al., 2012; Harper, Dyches, 

Harper, Roper, & South, 2013; Higgins et al., 2005) with Brobst et al. (2009) in particular 

reporting that “mothers whose children with ASD had the most intense behaviour problems 

reported lower levels of spousal support, respect for their partners, and commitment to their 

marriages”. As traction is gathering for the notion that marital issues for the parents of 

autistic children may not be successfully treated in isolation from parental issues, previously 



53 

 

reported literature focusing on gender differences in stress levels, (Baker-Ericzn et al., 2005; 

Gau et al., 2012; Jones et al., 2013; Shtayermman, 2013), and interaction styles, may be 

considered in a new light. Secondly, it is worth considering that a companionship may have 

problems which existed before a diagnosis, or independent of it; thus, the correct intervention 

to support a companionship may require much, little, or no special reference to a child’s 

autism (Saini et al., 2015). Thirdly, most literature has focused upon married couples, which 

has provided a limited scope to caregiving companionships; de-facto relationships, civil 

unions / LGBT marriages, and other companionship configurations, as with each family unit, 

have their own strengths and limitations, resources and constraints, and modes of living 

which must be considered before support can be truly individualised (Saini et al., 2015).  

Family social support. Having an autistic family member can be an isolating and 

complicated social existence for some families, especially where children / young people may 

not yet have acquired particular social norm skills. Problems may arise when a child can’t yet 

comprehend when it is ok, or not ok, to touch something, or someone; when it is safe, or not 

safe, to be somewhere; or how it is important to work in with others, such as waiting in line, 

or taking turns (Ministries of Health and Education, 2008). Conversely, parents might have 

trouble with managing outbursts, or unusual behaviour, because of embarrassment.  

In an online questionnaire, Myers et al. (2009) asked an open question about how a 

child on the spectrum has affected the life of parents, and the rest of the family. Qualitative 

content analysis revealed five negative clusters identified by parents, one of which was social 

isolation. The reported social isolation cluster featured three components that many of the 

parents identified with; firstly, that there were restrictions upon what a family could do, or 

where they could go. This restriction was felt for both commonplace social events, such as 

going to church, visiting a supermarket, or eating out; and also special events such as visiting 

relatives, going on holiday, or attending cultural events. Many parents also reported a fear of 



54 

 

dealing with public outbursts; it was often mentioned that families did not attend events 

together, as one parent would remain at home with the child of concern (Myers et al., 2009) – 

a concern which has also received coverage in Ludlow et al. (2012). The second cluster 

featured concerns over loss of parental friends, and loss of social life; not only did parents 

find it difficult to go places together, but they were no longer welcome in the homes of 

friends. Similarly, participants in Ludlow et al. (2012) reported that it was problematic to 

have friends visit their own homes. In the third social isolation cluster, a small number of 

parents described negative treatment in public by strangers, which caused embarrassment 

(Myers et al., 2009).  

Overcoming isolation and addressing the social needs of a family can vary 

considerably, depending on the scope and nature of the social event, the family members who 

might typically take part, and the challenges a child / young person might face. Thus, the 

types of social support needed may also vary considerably and may require cross-sectional 

support from both professional and personal domains. According to the NZASG, appropriate 

social skills can be taught, or enhanced, for those with ASD, however, control, choice and 

self-determination must be given due consideration also (Ministries of Health and Education, 

2008). However, as with other recommendations that have arisen in the NZASG, little is 

known about how effectively, or how individualised, such suggestions have been once put 

into practice. 

Respite care. As outlined previously, having a child, or children, on the spectrum can 

be both intensive and stressful for caregivers. Respite care offers an opportunity for 

caregivers to attend to the needs of other family members, or their own. Few studies have 

reported on the demands, or the benefits, of respite care for specifically families with ASD 

children. Bromley et al. (2004) have previously been cited for showing that respite care 

demands featured in, or could be associated with, three of the top four unmet needs reported 



55 

 

by mothers.  Firstly, the results showed that 87% of mothers felt that breaks away from caring 

for their child with ASD was a need which went unmet; secondly, 93% of mothers reported 

care assistance needs during holiday periods went unmet; thirdly, 91% of mothers considered 

being able to do the things they enjoy personally, as a service need that went unmet.  

Elsewhere, some of the benefits of respite care have been demonstrated by Harper et 

al. (2013). Although there were several marital processes which were not investigated, and 

the study featured convenience sampling (which may represent a high than normal degree of 

family functioning). This study of 101 mother-father dyads (caregivers to 118 children with 

ASD) showed that just one additional hour of respite care per week was related to a six to 

seven-point increase in marital quality (approximately one half of a standard deviation). The 

study also showed perceived parental stress (as was measured by daily hassles, rather than 

specific parental stressors), reduced as a result of respite care, and that respite care was 

positively associated with positive ‘uplifts’ (positive factors to negate / balance out negative 

factors). Interestingly, parents also reported their children as both a stressor, and an uplift 

(Harper et al., 2013).  

The NZASG affirms that regardless of whether respite takes place in or out of the 

home environment, “the environment needs to be structured and predictable, and it needs to 

support the function of the child in communication, personal independence and safe leisure 

skills” (Ministries of Health and Education, 2008, p. 173). The NZASG also points to the 

need of people who step in to help to have ASD specific knowledge, as well as culturally 

specific knowledge, as a starting point towards individualising respite to meet the unique 

needs of both child and family (Ministries of Health and Education, 2008). Although there is 

a general acceptance that respite care is beneficial, and needs to be more available to families, 

what constitutes good respite care for autistic children, or how individualised it might be, has 



56 

 

received very little coverage in the literature, especially in Aotearoa New Zealand, with its 

bicultural character. 

Transition management 

Transitional periods can bring uncertainty, stress, and fear for children, young people, 

and adults. For those on the spectrum, who often prefer predictable patterns and 

environments, times of transition into the uncertain can be especially trying (Ministries of 

Health and Education, 2008; J. B. Stoner, Angell, House, & Bock, 2007). Transitions are 

broadly considered to be divided into t