Abstract
Goal setting is integral to the provision of effective support, but little is known about community perspectives on support goals for autistic children. A total of 41 autistic adults, 50 parents of autistic children and 31 clinical professionals living in New Zealand and Australia completed open-ended survey questions regarding their perceptions of support goals for young autistic children. Reflexive thematic analysis resulted in five overarching themes related to early support goals: (a) neurodiversity affirming, (b) change the environment, not the child, (c) helping adults to support autistic children, (d) quality of life and (e) respect boundaries. The perspectives of autistic adults, parents and professionals were mostly aligned.
It is important to set meaningful goals during support for autistic children, but we don't know much about what autistic adults, parents, and professionals think about these goals. A total of 41 autistic adults, 50 parents of autistic children, and 31 people who support autistic children living in New Zealand and Australia completed a survey about their opinions of support goals for young autistic children. People who did the survey thought that it was important for goals to be “neurodiversity affirming”, which means that they should focus on the child's strengths and interests and should not try to change the child. They also wanted goals to focus on changing the adults who support the child as well as the world around them. They thought that goals should support autistic children to have good lives, and that children should not be made to do things they do not want to do. Autistic adults, parents, and people who support autistic children usually had the same opinions about support goals, but not always.
Autism is a neurodevelopmental condition associated with differences in, for example, social communication, interaction and sensory processing (Kapp et al., 2013; Pellicano & den Houting, 2022). Each autistic individual has their own unique strengths and challenges, and many may benefit from tailored support in the first 5 years of life (Whitehouse et al., 2021). Early support (e.g., interventions, therapies or services) may involve working directly with autistic children to improve skills such as communication, adaptive behaviour, gross and fine motor performance, and cognition (Fuller & Kaiser, 2019; Sandbank et al., 2020). Early support may also focus on upskilling individuals who frequently interact with the child, and on changing the environment and society to be more supportive of autistic people (Gillespie-Lynch et al., 2017; Pellicano & den Houting, 2022).
Most research examining perspectives on supports for young autistic children has focussed on autistic adult and parent experiences of accessing and/or participating in these supports. Much of this research relates to parents’ experiences of parent-mediated and direct support for their young autistic children (Jurek et al., 2022; Ogilvie & McCrudden, 2017; Rivard et al., 2021; Seo et al., 2022). Key themes often include the importance of positive relationships with professionals and the need for support to be both individualised and feasible in the context of families’ busy lives. The limited research examining autistic individuals’ experiences of early support has involved autistic adults reflecting on their childhood experiences of applied behaviour analysis. Most participants across two small studies described applied behaviour analysis as ‘abusive’ and/or ‘traumatic’ (Anderson, 2022; McGill & Robinson, 2020). While participants in Anderson’s (2022) study identified some positive long-term effects on, for example, communication, they also indicated ongoing harmful effects on their mental health. These results emphasise the importance of considering the views and experiences of autistic people and families when designing and implementing supports, in part to reduce the likelihood that these supports could result in harm to participants.
Goal setting is integral in the provision of support, however, there is limited research examining stakeholders’ perceptions of the specific goals of clinical supports for young autistic children. Indeed, support goals have traditionally been determined by clinical professionals with little input from the autistic community. Autistic advocates and researchers have questioned the ethics and necessity of goals aimed at reducing the characteristics of autism (Dawson & Fletcher-Watson, 2022). This includes goals aimed at reducing ‘stimming’ and increasing the use of ‘neurotypical’ social skills such as eye contact during communication. Such goals could be perceived as attempting to make the child ‘indistinguishable from their peers’ and/or diminishing the child's authentic autistic identity. Some claim that these types of goals encourage the ‘masking’ of autistic traits, which can have negative long-term outcomes (Miller et al., 2021). Several researchers involved in delivering support programmes for autistic children have recently released commentaries relevant to this area, advocating for a greater focus on goals and outcome measures that are meaningful to autistic children and families (Leadbitter et al., 2021; Vivanti et al., 2018).
Several quantitative studies have examined parents’ goal priorities for their autistic children. These studies involved online surveys conducted in Iran (Ghanadzade et al., 2018) or across English-speaking Western countries (Pituch et al., 2011), and professional-facilitated goal setting during an in-home support programme in Australia (Rodger et al., 2004). Across studies, parents prioritised goals related to communication, social interaction and reducing harmful/unsafe behaviours.
It appears that only one study has investigated and compared autistic adults, parents and clinical professionals’ perceptions of support goals for young autistic children (Waddington et al., 2023). In this online survey, conducted in New Zealand and Australia, all three groups of participants were asked to rate the appropriateness and importance of goals for young autistic children across 10 domains: academic skills, adult supports, autism characteristics, communication, daily living skills, motor skills, participation, play skills, reducing harmful behaviour and quality of life. Across groups, goals related to adult supports, reducing and replacing harmful behaviour, and quality of life were the highest priority, while academic skills, play skills and autism characteristics were the lowest priority. Autistic adults rated play skills, autism characteristics and participation goals lower and more likely to be inappropriate than parents and/or professionals. The reduced prioritisation of targeting autistic characteristics, including the teaching of ‘neurotypical’ social skills, compared to previous studies (Ghanadzade et al., 2018; Pituch et al., 2011; Rodger et al., 2004) could indicate increasing awareness of neurodiversity-affirming practice amongst the survey participants.
The quantitative nature of the Waddington et al.’s (2023) study means that it was not possible to determine the reasons why participants prioritised certain goals and found other goals to be inappropriate. Qualitative research is essential to understand the nuances of goal selection and prioritisation across the autistic and autism communities. The current study involved a qualitative analysis of open-ended responses completed by a subset of participants who took part in the Waddington et al. (2023) survey. Using reflexive thematic analysis, this qualitative investigation sought to identify key themes related to autistic adult, parent and clinical professional perceptions of support goals for young autistic children.
Method
This qualitative investigation is part of a broader project examining community perceptions of support goals for autistic children under the age of 6, and the quantitative results are presented separately (Waddington et al., 2023).
Ethical approval and informed consent
Ethical approval was granted by the Victoria University of Wellington Human Ethics Committee (approval number: 30094). Participants volunteered to partake in the survey anonymously. No identifying information was collected, and participants were asked to exclude identifying information in their responses. Participants received an information sheet at the start of the survey, which described the study, an estimated time for completing the survey and the primary researcher's contact details. Informed consent was obtained prior to survey commencement.
Participants
Participants were recruited through online autism-specific organisations in New Zealand and Australia and autism support groups for parents and autistic adults on Facebook. The parent groups generally welcomed all members, including autistic members. Some of the autistic adult groups were explicit in having a neurodiversity-affirming stance. The survey was available through these channels for 1 month. In the study advertisement and information sheet potential participants were informed that the aim of the research was to ‘explore perceptions of support goals for young autistic children’. They were not informed of any hypotheses so as not to bias the results.
To be eligible to participate in the survey, participants had to be living in New Zealand or Australia and to be: (a) an autistic adult over the age of 18, (b) a parent of an autistic child under the age of 18 and/or (c) a clinical professional working with an autistic child under the age of 6.
A total of 368 individuals consented to participate in the survey and 326 provided useable data for the quantitative research (Waddington et al., 2023). Of these, 122 participants provided a response on at least 1 of the 10 optional qualitative questions and were retained within the current study. These remaining 122 participants all completed the full survey.
In terms of primary identity/role, this included 41 autistic adults, 50 parents of autistic children and 31 professionals. The median response length across all participant groups was 33 words. Across all participants, there were a total of 736 unique qualitative responses, which ranged from one word (e.g. ‘yes!’ in agreement with the stated goals) to 701 words with 57 responses longer than 100 words. Autistic adults answered a median of 7 out of 10 possible qualitative questions and answers ranged from 1 to 701 words with a median of 62 words. Parents provided a median of 6 qualitative responses which ranged from 1 to 215 words with a median length of 42 words. Professionals provided a median of 5 responses which ranged from 2 to 170 words with a median of 35 words.
Demographic characteristics common to all participants are summarised in Table 1, while demographic characteristics that were unique to one specific participant group (e.g. age of diagnosis for autistic adults), are summarised in Supplemental Table 1. Most participants were female and New Zealand/Australian European, lived in New Zealand, had some education after high school, and interacted with young children most days. The most common age range for autistic adults was 26 to 30 and they were diagnosed with autism, on average, at 29.9 years. Only three autistic adults had received autism-specific support under the age of 5. The children of participating parents were most often male. The average child age was 7.5 and age of autism diagnosis was 4.6. Professional roles varied, with no more than 4 professionals per specific role.
Demographic characteristics for autistic adults (n = 41), parents (n = 50) and professionals (n = 31).
* All of the participant roles/identities rather than the identity/role they chose for completion of the survey.
** Includes additional non-Māori ethnicities for some participants.
The proportion of participants belonging to each demographic category in this smaller sample was generally similar to all participants who took part in the quantitative research (Waddington et al., 2023), except that proportionally more autistic adults and fewer parents provided qualitative responses. Further, in this smaller sample there were no participants from the Pacific Islands, Africa, North America or South America and proportionally fewer speech language therapists. The autistic adults who provided qualitative responses were more likely to have co-occurring diagnoses such as anxiety, depression and ADHD than the full quantitative sample.
Procedures
Members of a broader research team (HW, HM, LP, LvdM and AJOW) developed and disseminated the survey. A variety of tools were used to develop the survey questions, including the Mullen Scales of Early Learning (Mullen, 1995), the Vineland Adaptive Behaviour Scales (Sparrow et al., 2016), the Early Start Denver Model Curriculum Checklist (Rogers & Dawson, 2010) and two New Zealand frameworks, Te Whāriki (Carr & May, 2000) and Te Whare Tapa Whā (Rochford, 2004). The New Zealand frameworks provided cultural viewpoints on wellbeing and quality of life, which are prominent within Te Ao Māori (the Māori world) and are underrepresented in Western assessment tools.
HW, HM, LP, LvdM and AJOW initially met twice over Zoom to mutually decide on the aims of the survey and relevant resources to inform its development. The survey draft was compiled by HM and sent to all aforementioned authors as well as other members of the autistic and autism communities (see Community Involvement) for feedback. HM then attempted to address all feedback by either including the edit in the survey or explaining why the suggested edit was not possible (e.g. it was beyond the scope of the study). All aforementioned authors reviewed the revised survey and either approved the current version or suggested further revisions. All were satisfied with the final version of the survey.
The survey included three sections: (1) demographic information, (2) views on early professional supports, and (3) views on the appropriateness and priority of early learning goals.
In the first section, participants were asked to provide information regarding their gender, ethnicity, highest level of education and their experience with non-autistic preschool-aged children (ranging from rarely interacting with young children to interacting with them most days). Participants were able to select more than one identity/role (e.g., autistic adult, parent/caregiver or professional). To reduce the burden on participants, those with multiple identities/roles were asked to choose which of these identities/roles they would like to use when responding to further demographic questions. Those who chose ‘parent’ were asked for information regarding their relationship to the child (e.g. biological mother and stepmother), the child's gender, age and ethnicity, age of diagnosis, other clinically relevant diagnoses (e.g. ADHD, anxiety or depression), and their history of accessing professional supports (e.g. type of support, intensity, and whether supports were received prior to age 6). Those who chose ‘professional’ were asked for information about their current role, role duration and the extent of their experience working in clinical practice with autistic children. Finally, those who chose ‘autistic adult’ were asked for their age, age of diagnosis, other clinically relevant diagnoses, whether they experienced autism-specific supports prior to the age of 6, and if relevant, the number of hours of support they received per month.
The second section examined participants’ perspectives on early professional support, including the appropriateness of early supports and their model of support/disability (e.g. social model and medical model). This section was not examined or included in the current study.
The third section examined participants’ views regarding the appropriateness and priority of various early learning goals for autistic children. Goals were grouped into domains according to the skill they were targeting. These domains related to academic skills, adult supports, autism characteristics, communication, daily living skills, motor skills, participation, play skills, reducing harmful behaviour and quality of life. Overall, there were 2 to 7 goals within each of the 10 domains. Each question asked the participants to imagine the proposed goal was for a 3-year-old autistic child. Participants were asked whether they thought each goal was appropriate and, if appropriate, to rate its priority on a four-point Likert scale from ‘not at all a priority’ to ‘high priority’. Within each domain, participants were given the option of expanding upon and explaining their answers within a free-text box. The current study examined these qualitative responses.
Once finished, participants were thanked, encouraged to share the survey, and given the option to download their responses.
Data management and analysis
Quantitative and qualitative survey responses were compiled into a spreadsheet for analysis and, for the current study, only qualitative responses were retained. The remaining qualitative responses were split into three tables according to the respondent's primary role (autistic adult, parent or professional) and were uploaded to NVivo for analysis. All quotes were retained as written by the participants and were labelled by all participants’ roles and identities and identification number (e.g. ‘Autistic Adult and Parent, 1’).
The reflexive thematic analysis occurred in two phases (Braun & Clarke, 2019). First, tentative codes and themes were constructed and checked for resonance. Specifically, one researcher (ES) independently analysed data pertaining to goals perceived as inappropriate and created a set of tentative themes. A second researcher (PJ) independently analysed a 20% subset pertaining to goals perceived as appropriate and created a second set of tentative themes. Both researchers used an inductive approach to analysis where coding was closely aligned with and driven by the data. Data were coded at the surface or semantic level (Braun & Clarke, 2006) and theme names were based on the participants’ own language. The two sets of codes and themes were then combined and a resonance document, consisting of tentative themes and subthemes with a representative quote for each, was created. The document was sent to the rest of the research team and an autistic adult, a professional, and a parent, all of whom indicated that the themes and subthemes aligned with their understanding of support goals for young autistic children. The survey participants were anonymous and so did not provide feedback on the themes or subthemes. In the next phase, PJ used the feedback on the resonance document (e.g. altering the theme names and descriptions) to finalise codes and themes. She then used this resonance document to guide the coding of the remaining dataset. She did not identify any new themes or subthemes that did not align with those originally identified. HW and JT provided feedback on the resulting themes and quotes, and PJ incorporated this feedback.
In qualitative research, it is important to understand the positionality of the researchers. Across the team, our understandings of autism are informed by a neurodiversity perspective meaning that we view autism as a brain-based difference, rather than a deficit or disorder (Pellicano & den Houting, 2022). We approached the research from a constructivist perspective meaning that participants were presumed to construct their own knowledge, rather than passively processing information (Larochelle & Bednarz, 1998). We also recognised our own subjectivity and how our personal experiences and perspectives influence our research. Several team members currently provide, or have previously provided, clinical support to autistic children and their families. Some team members also perform an autism advocacy role within their organisation. Most of the team, including autistic team members, were originally educated and/or trained using a predominantly medical or deficit-focussed model of disability. We are actively working to align our understanding and approach to autism with the perspectives and needs of the community. Several team members have lived experience of neurodivergence including autism and/or are family members of neurodivergent people, including autistic people.
Community involvement
This research was co-designed at all stages by HW, HM, LP, LvdM and AJOW, while PJ, ES, RM, ES and JT provided input into the analysis, themes and/or drafts of the manuscript. LP and RM are autistic adults. LP and LvdM are employed by a national autism organisation. HW and JT are related to autistic young people. A larger advisory group of autistic adults, parents and professionals provided input on the contents of the survey, as did a mother of an autistic child.
Results
To provide context for the qualitative analysis, Supplemental Table 2 details the quantitative scores for each item on the survey as well as example quotes for each goal domain. The highest frequency responses on each item for the subset of 122 participants in this current study aligned with those of all participants in the broader quantitative research in 52 instances (Waddington et al., 2023). Participants in the current study most commonly rated identifying letters, holding a pencil and sharing toys as a medium priority while these goals were most commonly rated as a high priority in the quantitative research. Participants most commonly rated using toys as intended and pretend play as inappropriate goals in the current study, while these goals were most commonly rated as a low or medium priority in the quantitative research.
The reflexive thematic analysis resulted in five overarching themes, all of which had one or more subthemes. The themes were: (a) neurodiversity affirming (subthemes – differences are not deficits, do not replace functional behaviour, interests are strengths); (b) change the environment, not the child (subtheme – compromise); (c) helping adults to support autistic children (subtheme – awareness); (d) quality of life (subthemes – autonomy, safety) and (e) respect boundaries (subtheme – not essential).
Neurodiversity affirming
Participants reflected on the importance of goals embracing the child's neurodivergence. Goals should be focused on the child's strengths and not trying to get them to behave like a neurotypical child. (Parent, 224)
Intense interests, sensory sensitivities and stimming are just parts of being autistic and don't need to be changed- stimming and interests don't harm anyone and can be a coping mechanism or source of joy. (Autistic Adult, 79)
Participants emphasised that goals suppressing autistic characteristics teach masking, which can be harmful to one's mental health. Participants explained that masking may force autistic people to hide their internal reactions to stimuli and could lead to a sense of disconnect and confusion between the person and their needs and emotions. You CANNOT change how an autistic person perceives the sensory environment. That's like telling a neurotypical person “don't feel pain” - each person has their own threshold and their own reaction […] You can only force them to hide and mask their reactions. (Autistic Adult, 53)
Differences are not deficits
Participants across groups expressed that children's differences are not deficits. Many of these responses centred around play goals with participants stating that there is no one way to play. They indicated that play should be a safe space for children to experience joy. They may have their own make believe that none of us can see or understand. Working on “make believe” is just so you can tick off that you are working on one of the perceived deficits of people with autism. It is pointless and demeaning in so many ways. (Professional, 121) The measures of engagement might also be very subjective, especially as autistic children often play and socialise differently than non-autistic people, and this is not wrong. (Autistic Adult, 204)
Participants stated that there is no ‘one size fits all’ for milestones and that goals should embrace children's differences as they develop at their own pace and in their own way. Each child's timetable for learning them has to be respected. Goals need to be small and achievable, and may take a long time. (Parent, 111)
Do not replace functional behaviour
Across groups, participants expressed that goals should not aim to replace a child's functional behaviour with behaviour deemed ‘conventional’ by society. Most of these responses centred around goals supporting autistic children to communicate through their preferred method. A goal for autistic children could appropriately be using their preferred communication to communicate what they want and need, which means that the child would need to know how to communicate using their preferred method. (Autistic Adult, 204)
Interests are strengths
Participants across groups emphasised that children's interests are their strengths. Participants suggested if children's interests are incorporated into their goals, they will likely have more success. If they’re interested in music, you can introduce maths through the number of notes. If they’re interested in shapes, you can introduce letters, through the names of the shapes etc. (Autistic Adult and Parent, 123)
Change the environment, not the child
Autistic adults and parents reported that goals should aim to understand the underlying contributors to the child's behaviour and change the child's physical and social environment, rather than changing the child. Behaviours have causes. Address the causes and behaviour changes. By addressing the behaviour not the cause you are tell[ing] the child they are not allowed to be happy or safe. But must comply with you even if it hurts them. (Autistic Adult, 125) A child with disabilities often spends hours being trained on how to interact with non-disabled people, but when do non-disabled people become accommodative of those with special needs? (Autistic Adult, 341) It is inappropriate and somewhat cruel to expect the child to adapt to an absence of a routine when this could be something they could be prepared for using routine planning boards, story boards, social stories etc. (Autistic Adult, 204)
Compromise
Several participants across groups reported that even when every effort has been made, it is not always possible to fully accommodate children's needs. These responses often referred to changes in routines and sharing items. In some cases having more flexibility may be necessary when there is no way to accommodate the child's need for routines. (Autistic Adult, 204) I think with adjusting routine there should be compromise between the parents and autistic child so a balance is reached and the child is also taught how to adapt to changes in a safe environment. (Parent, 117) They should be supported to use strategies where appropriate but not forced to endure sensory discomfort for the benefit of others. (Autistic Adult, Parent, and Professional, 324)
Helping adults to support autistic children
Participants across groups indicated that adults need help to create goals and support autistic children to achieve them in a neurodiversity-affirming manner. Many of these responses referred to communication and participation goals. We need to start coaching and empowering parents so they can meet the needs of their autistic child instead of trying to change them into a neurotypical child. (Autistic Adult, 198) It is vital that teachers and parents understand that there is a difference between priorities, and reasonable expectations. (Autistic Adult and Parent, 123) I think ASD parents will always need support & guidance to support their child, regardless of how well they respond to their children's needs. We may be ticking all those boxes, but we don't stop to think of the parents mental health & wellbeing & to see what THEIR needs may be. (Parent, 47) More time needs to be spent on how adults create the right environment, create the quality of interpersonal engagement that enable autistic children to learn. (Professional, 320)
Awareness
Autistic adult and parents voiced the need for greater community awareness of what autism is. This included an understanding that autism is not something to ‘cure’ or ‘fix’ so this should not be the aim of goals. The parents expect therapists or doctors to ‘cure’ or ‘fix’ their child, this will never happen and that needs to made clear. (Autistic Adult, 198) Other neurotypical children should also be taught that everyone is different and that it's OK to have a friend who is different from them, and how to make sure their autistic friend feels happy and welcomed in their friend groups. (Autistic Adult, 197)
Quality of life
Participants across groups emphasised that everyone deserves a high quality of life and child goals should reflect this. Happiness, health and independence were all described as important characteristics for a high quality of life. Many participants described a child's happiness to be the most important goal. Autistic people are much more vulnerable and sensitive, so we must make sure their quality of life is as best as it can be, while also taking care of ourselves, our community and our world. (Autistic Adult, 197) Social skills are a very important part of life and helping the children with these skills can enhance their connections and relationships with others. (Professional, 205) Communication reduces stress for child and family and reduces dysfunctional communication methods eg pushing shouting. (Professional, 194)
Autonomy
Autistic adults and parents stressed the importance of goals related to independence and self-care. Participants emphasised that independence looks different for everyone. They suggested that goals consider each child's different levels of support needs in different domains. As an autistic adult I get support at reminding me to do some of these tasks - so technically am not “independent”, but do the tasks myself when reminded. Being able to physically do the tasks myself increases independence, but respect of the areas that I need support in is also important. (Autistic Adult, 53) Opportunities are good but the child shouldn't be expected to demonstrate enjoyment and engagement if they didn't contribute to the setting of the goal. (Parent, 128)
Safety
Participants across groups indicated that physical and mental safety were essential considerations in the creation of goals. Physical safety was seen, for example, in goals focusing on movement. I think the child being able to move around safely and be physically supported (as needed) is absolutely an appropriate goal. (Autistic Adult, 204) Children should be given help to find ways to self-regulate without hurting themselves, but that help needs to be gentle and not cause more harm (ie, restraining a child might do more harm physically or in terms of trauma than letting them hit their own legs with open hands). (Autistic Adult, 151) Following simple instructions supports awareness of safety and access to community activities (i.e. road safety or staying with supervising adult when at the shops etc). (Professional, 88)
Respect boundaries
Many participants across groups indicated that goals should respect the child's boundaries. Participants commented that goals should not force a child to do something they do not want to do. Sharing can be a good social skill, but children often have toys that they do not want to share because it holds great sentimental value to them, and helps soothe them in stressful situations. It is important to respect their boundaries if they are not comfortable sharing their special toy. (Autistic Adult, 197) Gentle and consistent attempts are best, otherwise the child will become so distressed, that the goal itself will become terrifying to them. (Autistic Adult and Parent, 123) During play, children should be gently supported to try it and to develop flexibility around playing in different ways, but they shouldn’t be forced or trained to do it. (Autistic Adult, 71)
Not essential
Participants across all groups described certain goals as not essential. Some participants thought it was not acceptable to target these non-essential goals. These responses mainly centred around social, independence, play and specific communication goals. It is not a suitable goal to expect the child to engage in social activities that they do not want to be a part of. (Professional and Autistic Adult, 146) Forcing kids to do imaginative play (gross, always hated it - I always just found it super cringy) or forcing them to conform their play style to neurotypical play styles is wrong. (Autistic Adult, 147)
Goals targeting eye contact were most frequently and consistently identified as non-essential across participant groups. Participants expressed that eye contact is unnecessary for communication and can be distressing for autistic people. Furthermore, participants highlighted that the use of eye contact in social settings is a social construct and is used differently across cultures, therefore eye contact is not a culturally appropriate goal. Eye contact isn’t necessary for proper communication. Autistic people should also not be expected to make facial expressions that match the way allistics use them. (Autistic Adult, 71) [Cognitive goals are] Non essential at 3yrs for a typical child let alone a-typical. Let's first teach a child to communicate needs and wants. (Parent, 25)
Discussion
In this study, we qualitatively examined the perspectives of New Zealand and Australian autistic adults, parents and clinical professionals on support goals for young autistic children. Using reflexive thematic analysis, we identified five overarching themes. Overall, these themes reflect the perceived importance, across groups, of respectful, neurodiversity affirming goals which promote child quality of life. Many participants also valued goals aimed at changing the individuals around the child and the environment, rather than the child themselves. The fact that most themes and subthemes were expressed by autistic adults, parents and professionals suggests general consensus across groups and a broad understanding of, and desire for, neurodiversity affirming practice within this sample. This is an important finding as researchers and media often focus on disagreements between these groups (Kenny et al., 2016 Schuck et al., 2021).
The perceived importance of neurodiversity affirming goals was a theme in its own right and underpinned several other themes. As with the Waddington et al. (2023) quantitative study, this emphasis on neurodiversity affirming goals suggests that participants in the current study were more aligned with the principles of neurodiversity than parents who participated in earlier goal prioritisation studies (Ghanadzade et al., 2018; Pituch et al., 2011; Rodger et al., 2004). This could reflect greater community awareness of the neurodiversity movement more broadly (den Houting et al., 2021; Leadbitter et al., 2021).
Participants shared that goals targeting autistic characteristics could encourage masking and that it was essential to respect and value, rather than attempt to change, inherent differences in the ways autistic children play, communicate and socialise. Participants also expressed that autistic interests should be seen as strengths and, thus, promoted and encouraged when setting child goals. These points are similar to those made by several researchers and autistic advocates (Dawson & Fletcher-Watson, 2022) and, notably, they appear to be shared by members of the autistic and autism communities in New Zealand and Australia.
Participants felt that support goals should not be exclusively focussed on developing child skills. Some autistic adults and parents stressed the importance of goals focused on changing the environment rather than the child. Similarly, participants across groups desired goals aimed at empowering parents and teachers to change their own behaviours, as well as goals aimed at increasing awareness of autism across society. This supports a social model of disability, in which the challenges experienced by autistic people are understood to be caused by societal stigma and an unsupportive environment, as opposed to ‘deficits’ within the individual (Kapp et al., 2013; Leadbitter et al., 2021). Some participants shared that there may be instances when changes to the environment are either not possible or insufficient, and, in such circumstances, children could be respectfully supported to learn necessary skills and coping mechanisms.
Participants stated that goals must lead to improvements in child quality of life. Participants expressed that happiness, health, independence, safety and the ability to communicate one's wants and needs were all linked to quality of life and were, thus, important and valuable support goals. Professionals linked ‘improvements’ in autistic child play and social skills to increased quality of life. This aligns with the findings of Botha and Cage (2022) indicating that some autism researchers perceived the characteristics of autism themselves to be ‘a barrier to a good life’ (p. 12).
Several themes indicate that participants valued child self-determination, that is, the child's ability to control their own lives (Shogren et al., 2015). Parents shared that children should be included in goal selection, an idea increasingly echoed by autism researchers and policy developers (Leadbitter et al., 2021; Trembath et al., 2022b). Autistic adults and parents also stressed the importance of child independence, and that the nature of this independence varies across children. Participants across groups emphasised the need to ‘respect boundaries’ by not ‘forcing’ children to engage in a goal if they do not want to. They varied in their perceived approach to ‘non-essential’ goals. Some thought it was acceptable to target these goals provided that the child was motivated and ‘ready’ for the goal, while others felt it was not appropriate to target these at all.
There are several potential implications of this research. First, support goals should be neurodiversity affirming and community members should be cautious of goals directly targeting autistic characteristics. Teachers, parents and professionals may all benefit from clear guidance and training on how to select, target and prioritise neurodiversity affirming goals. Goals should not focus exclusively on the child, but rather encompass goals that relate to upskilling parents and teachers, and changing the environment more broadly. Supports could also focus on parents’ wellbeing and health. There is also a need for greater community awareness of the fact that autism is not something to be fixed or cured. This awareness could also be raised in other children including peers and siblings.
This study is limited in several ways. The open-ended questions were optional and it is possible that the subset of survey participants who completed these questions held different views than those who did not. This survey was distributed through online autism organisations and support groups. Participants may not be representative of all members of the autistic and autism communities in New Zealand and Australia. For example, they may have been more likely to endorse neurodiversity affirming practice, as information about this topic was regularly disseminated in many of these groups and some autistic adult groups explicitly promoted this approach. Autism New Zealand who collaborated on conducting and disseminating this research is explicit in their neurodiversity affirming approach to support, which may also have encouraged those with similar views and discouraged those with dissenting views from participating. It is important to note, however, that all large online groups will naturally include members with a range of viewpoints and perspectives, including the Facebook group and database for Autism NZ, which is the largest autism support and advocacy organisation in New Zealand. Participants in the current study were more likely to be autistic and also to rate certain play goals as inappropriate compared to the full set of participants who completed the quantitative study (Waddington et al., 2023). This suggests survey participants who provided qualitative responses may also have been more likely to broadly support neurodiversity affirming practice than the participants in the survey who did not provide qualitative responses.
Qualitative responses were directly linked to Likert-type questions with explicit examples of goals across various domains (e.g. social skills and communication). Participants may have responded differently if they were asked about their perceptions of support goals without these specific examples as prompts. In line with the gender response bias typical of survey participation in this area, most respondents in all groups, including autistic adults, identified as female (Crane et al., 2016). Consistent with trends for autistic females, most autistic participants had been diagnosed as adults, thus unlikely to have received support as a young child (Rutherford et al., 2016). As such, their views may differ from those who were diagnosed as children and/or received support as a young child. Of note, most of the autistic children of those in the parent group were male, received supports as a young child and 14% had a co-occurring developmental delay or intellectual disability. While this study did not survey the children themselves, the similarity in perspectives between the autistic adult group and the parent group may suggest that the views of the autistic adults group are shared across the autistic community. Professionals may have been underrepresented in the analysis as they provided proportionally fewer and shorter responses. For example, when a theme or subtheme was not shared by professionals, it was unclear whether they did not endorse this idea or whether they simply did not mention it in their responses.
Despite the general consensus that improvements in child quality of life should be the primary aim of early support, this outcome is seldom included in research (Trembath et al., 2022a). This means it is impossible to determine whether existing supports lead to improvements in child quality of life. Researchers must develop reliable and valid measures of child quality of life, and these measures should be included in all studies evaluating the effects of supports. We also need a greater understanding of the characteristics of autistic play and socialisation, so that these can be supported, rather than attempting to find neurotypical replacements for these skills. Researchers should also examine the perceptions of autistic children on their own support goals, using techniques suited to their communication level and preferences. In this study, parents had autistic children who were diagnosed on average 3 years prior to them completing the survey. Future research could examine the perceptions of parents of newly diagnosed children regarding support goals and how these perceptions might change over time. Researchers should also determine the best ways of including autistic children, particularly young children, in the selection of support goals. While participants mentioned that social skills such as eye contact vary across cultures, more research is needed into perceptions of support goals for autistic children across different cultural groups, including Indigenous Peoples.
Supplemental Material
sj-docx-1-ndy-10.1177_27546330231218587 - Supplemental material for Community perspectives on support goals for young autistic children: A qualitative investigation
Supplemental material, sj-docx-1-ndy-10.1177_27546330231218587 for Community perspectives on support goals for young autistic children: A qualitative investigation by Hannah Waddington, Phoebe Jordan, Eadi Scott, Hannah Minnell, Lee Patrick, Larah van der Meer, Ruth Monk, J. O. Whitehouse Andrew and Jessica Tupou in Neurodiversity
Footnotes
Acknowledgments
First and foremost, the authors thank all the autistic adults, parents, and professionals who took the time to complete the survey. The authors also thank Carla Wallace-Watkin and all members of the Victoria University of Wellington Autism Clinic Advisory Group for their input on the development of the survey.
Declaration of conflicting interests
HW is the Clinic lead of the Victoria University of Wellington Autism Clinic and AJOW the director of CliniKids, both provide support to young autistic children. JT and PJ also provide support to autistic children.
Funding
This research was funding by several Summer Scholar grants from Victoria University of Wellington. AJOW is supported by an Investigator Grant from the National Health and Medical Research Council (#1173896).
Supplemental material
Supplemental material for this article is available online.
References
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