Understanding the support experiences of families of children with autism and sensory processing difficulties: A qualitative study

Abstract Background Support, such as information, advice and therapies, can play a vital role in the lives of families of autistic children. However, little is known about the support experiences of UK parents and carers. Aim To explore experiences of and access to support for families of children with autism and sensory processing difficulties, from the perspective of parents and carers. Methods Semi‐structured, timeline‐assisted interviews were conducted with parents/carers of 30 children aged 5–11, exploring experiences of support. Framework analysis was used to identify themes in the interview data. Results Support varied widely and was not accessed equitably. Specialist autism support, together with support from other parents and voluntary organizations, was perceived as more useful than statutory and nonspecialist provision. Unmet support needs included an ongoing point of contact for information and advice for parents, and access to direct therapy and specialist mental health provision for children. Conclusions Findings emphasize the need for a clear pathway of support following autism diagnosis, autism‐specific training for professional service providers and specialist provision tailored to the needs of autistic children. Patient or Public Contribution An advisory group of four parents of children with autism provided feedback on study procedures and materials, including participant information sheets and timeline completion instructions.


| BACKGROUND
It is estimated that 1%-2% of primary school children in the United Kingdom have autism. 1 Autism can have a substantial impact on school and family life, and the estimated annual cost of formal and informal support is £3.1 billion. 2 Therefore, it is vital that support is effective and delivers value for money. For the purpose of this study, 'support' is defined as encompassing information, advice, support groups and therapies for children with autism and their parents, provided via statutory services, charities or informal networks. A recent report highlights significant gaps in the evidence base for autism support. 3 Services across the United Kingdom are variable, 3 and research suggest there is no defined pathway for support of children and parents following autism diagnosis. 4 There is a clear need to further explore support experiences amongst this group, focusing on both access to support and the usefulness of provision.
Children and young people with autism are more likely than the general population to experience anxiety, 5 bullying 6 and a lack of friendships, 7 and are at greater risk of self-harm behaviours and suicide. 8,9 There are also effects on the wider family, with parents of children with autism experiencing on average higher levels of stress and depression, 10,11 feelings of stigma 12 and loss of earnings. 2 Over 90% of children with autism also experience some sensory processing difficulties, 13 which have been found to limit participation in daily life and leisure activities. 14,15 Hyper-and hypo-responsiveness to sensory stimuli amongst children with autism are also associated with greater caregiver strain; 16 therefore, parents of children with autism and sensory processing difficulties may require additional support.
Effective provision of support for families can mediate the effects of some of the aforementioned challenges. For example, professional support has been shown to reduce parental stress, 17 improve parental competence 18 and increase children's participation in daily life. 19 Conversely, inadequate support can have negative consequences, such as feelings of isolation and alienation, 20 lower reported psychological wellbeing 21 and reduced parental participation in employment and leisure. 22 Previous research has shown considerable variation in access to support (e.g., from psychologists, psychiatrists and speech and language therapists) for children with autism and their families. 23 Provision in the United Kingdom varies across the devolved nations and by locality, due to differences in service availability, eligibility criteria, waiting times and local authority spending. 24 A study of parents in London and the East of England found that while some felt well supported by a range of external organizations, others did not feel they had adequate support or information. 25 Although little UK research has examined differences in provision between rural and urban areas, studies in the United States and Canada report that families living rurally experience considerably greater difficulty accessing specialized services. 26,27 Despite the wide range of autism support services available throughout the United Kingdom, little contemporary research has explored the relative perceived usefulness of different forms and sources of support. Parents surveyed in one county in England quantitatively rated support received from early years courses and their child's school as most useful, together with information from family workers, local support groups and workshops. 28 An interview study of 20 parents in London and the East of England found support from other parents of children with autism was highly valued, enabling the sharing of ideas; charities were also cited as providing helpful information. 25 However, this study was conducted over a decade ago in a discrete geographical area, and it is proposed that further qualitative research is needed to add validity to the evidence base. 3 Given the challenges faced by families of children with autismand the additional support needs where children also have sensory processing difficulties-effective provision for this group is of vital importance. There is currently limited knowledge of the support experiences of UK families, and little research to date has explored the utility of existing interventions. This study aimed to qualitatively explore access to and perceived usefulness of support for families of children with autism and sensory processing difficulties, from the perspective of parents and carers.  Semi-structured interviews were conducted with parents/carers of children enroled in the SenITA study. To enhance the richness of interview data, interviewees were asked before the interview to create a timeline of key events in their child's life, which they used as a tool to share their experiences with the researcher. Chronological visual methods such as timelines can help interviewees to structure a narrative account that reflects the breadth and depth of their experiences, which may not be fully elicited via traditional interview methods. 30

| Participants
Interview participants were parents or carers of 30 children with autism and sensory processing difficulties enroled in the SenITA study (see Table 1), recruited from three areas of England and Wales: South/West Wales, Cornwall and North Buckinghamshire. Inclusion criteria for the SenITA study were that children had to: (1) have a diagnosis of autism documented in their medical/educational records, or be undergoing assessment within the local autism diagnostic pathway; (2) be aged 4-11 years; (3) be in mainstream education and (4) have sensory processing difficulties (definite dysfunction on one or more sensory dimensions and the total score of the Sensory Processing Measure, 31 or probable dysfunction on more than one sensory dimension and the total score of the Sensory Processing Measure). Those receiving or who had previously received sensory integration therapy, or who were receiving an intensive applied behaviour analysis-based intervention were excluded. 29 Most interviews (26) were conducted with children's mothers, two were conducted with mother-father pairs, one with the child's father and one with a grandparent. At the time of interview, children were aged between 5 and 11 years (mean: 8, SD: 2.0).

| Materials and procedure
Interview participants were recruited purposively from the SenITA study database to ensure variation as far as possible in terms of child gender, age and geographical location. Recruitment ceased when the depth and breadth of data collected were considered sufficient to capture the range and richness of participants' experiences. Potential participants were contacted by the qualitative researcher via telephone or email and asked whether they would be interested in taking part in an interview. If they agreed, they were posted an information pack containing a participant information sheet, two copies of a template timeline, timeline completion instructions with an example completed timeline and some coloured pens. Around 1 week after posting the information pack, the qualitative researcher recontacted parents/carers to ask whether they were willing to take part. If they agreed, a mutually convenient time for the interview was arranged. Participants were given the option of taking part in an interview face-to-face at their home or workplace, or over the telephone. They were offered a £10 shopping voucher as a thank you for their time.
Interview questions (see Table 2) were developed by qualitative researchers S. M. and L. B. H. in collaboration with the SenITA study management group and parent advisory group. There were eight main questions designed to explore participants' support experiences, each with several follow-up questions to be used as prompts where more in-depth information was needed. Interview participants were asked to complete the template timeline before the interview; those participating in telephone interviews were asked to send a copy of the timeline to the researcher via email. The timeline instructions requested parents/carers to note down the different types of therapies, interventions and strategies they had experienced with their child, from the time they first saw signs that their child might be autistic until the present day.
Interviews were conducted between February 2019 and March 2020 by S. M., an experienced qualitative health researcher not involved in the provision of autism services. Most interviews (19) were carried out face-to-face, with 11 conducted over the telephone.
For face-to-face interviews, participants completed a written consent form before the commencement of the interview. Consent for telephone interviews was obtained verbally and audio-recorded.

| Patient or public contribution
Parents of children with autism were involved in the design of the study to inform the development of study recruitment and data collection procedures, helping to ensure suitability for the participant group. An advisory group of four parents was formed, with members providing feedback via face-to-face meetings and email. Contributions to study design included suggestions of groups and charities that could be targeted to advertise the study to parents and health professionals, and feedback on qualitative data collection materials.
For example, it was suggested that timeline instructions should include specific questions to help parents recall more detailed information about their support experiences. A list of prompt questions was subsequently devised and used successfully. Due to time constraints, the advisory group was not involved in the analysis of qualitative study data, which could have provided additional insight into study findings and would be useful to incorporate in future studies.

| Analysis
All interviews were professionally transcribed verbatim and anon- Illustrative quotes from the coded transcripts were included so that the validity of themes could be reviewed by both qualitative researchers to ensure they accurately reflected the experiences of participants. The themes were discussed until consensus was reached.

| RESULTS
Completed timelines enabled examination of the support families typically accessed at each stage of their child's journey (see Figure 1).
Although experiences varied widely, the involvement of key professionals in the early stages tended to follow a similar pattern. Parents described noticing the first signs of autism when their child was aged 1-2 years. At that stage, the families' key contact was the health visitor, with whom parents raised initial concerns (which were often dismissed). Difficulties with speech tended to be noticed by professionals early on, leading to the involvement of speech and language therapists and paediatricians. Starting nursery and then school appeared to be a causal factor in support provision increasing, including the involvement of charities and professionals such as occupational therapists and psychologists. However, most children did not receive any specialist autism support until later in their primary school life.

T A B L E 2 Interview questions
Some forms of support, such as the National Autistic Society EarlyBird Programme (a specialist autism support programme for parents), were not accessed until after children had received a diagnosis.
Following diagnosis, service provision was much more varied, and other than the EarlyBird Programme, there was no obvious pathway to support.
Following analysis of timelines and interview transcripts, three main themes were identified as representing the key perspectives provided by the data. Within each main theme, there were several emergent subthemes (see Figure 2). These are discussed in turn below, illustrated by quotes from participants. All participant quotes are labelled with a participant ID number to preserve anonymity.

| Variation in support received
There was wide variation in the support received by families, with some accessing between one and three sources of support, while others were supported by 10 or more organizations or professionals.
There did not appear to be any differences in the amount of support accessed in relation to child age, gender or rurality, although some parents reported limited local service provision. There was no clear pathway to support, which was accessed in multiple ways, including via school, parents' own research and networks, medical professionals and charities. Often there was a domino effect, whereby families were referred into one service, which referred them to another, and so on. (P2) While one parent reported that services seemed to be provided automatically following their child's diagnosis, others found they had to be proactive in seeking support.
I went off and did ASD parenting courses, as you do.
And probably went into doing quite a lot of self-led learning and finding support groups for me and for the children… Everything we've done, we've done ourselves. (P23)

| Support changes since diagnosis
Receiving an autism diagnosis enabled some children to access additional support, most notably in school; for example, by receiving a statement of special educational needs (a legal document detailing the educational needs of an individual child and how these will be met) or

| Limits of support
In addition to gaps in support provision, the support families did receive seemed to be time-limited or ended following diagnosis.

| Generic versus specialist
Parents viewed specialist support as being most useful, while more generic support often did not meet the needs of the child or family.
Health visitors tended to be parents' first source of help and advice (and were gatekeepers to specialist services) but were mostly described as being dismissive of the early signs of autism.

| Direct therapy for children
An important gap in provision related to direct therapeutic support for children, particularly occupational therapy for sensory issues.
Some parents identified that most services their family had accessed were focused on the parents rather than the child, or on diagnosis rather than support.

The integrated autism service… have an OT [Occupa-
tional Therapist] and all sorts but they don't actually see the child, they just speak to the parents… People There's no help… for these children at all… I think it took six referrals to CAMHS… she grabbed a knife, Findings align with data showing that service provision for children with autism is variable across the United Kingdom. 24 Access to existing provision has previously been found to depend on socioeconomic and family circumstances. 23,25 For example, families of children with Down syndrome-who tend to report a lower incidence of poverty and higher levels of parental education compared to families of children with other neurodevelopmental disabilities 36,37 are more likely to report having their support needs met. 38,39 We found that in some cases, autism support was accessed by families as a result of parents' professional or social networks.
Some had the ability to proactively seek out sources of support or information, or to pay to access services privately, while this was not an option for others. The lack of a defined pathway of support for families of children with autism (as found in this study and previously) 4 is likely to compound this disparity.
Specialist rather than generic support was described as most helpful to families in this study, consistent with previous survey findings that parents rated information provided by an autism family services worker as more useful than information from professionals not specialized in autism. 28 Parents in the present study explained that services such as SALT and CAMHS did not seem equipped to support children with autism, discharging them due to assessment difficulties or an inability to address their specific needs. In support of this, an international systematic review found that limited knowledge of autism amongst therapists was a key barrier to mental health support for children and adults with autism. 40 Support from charities filled an important gap in provision and tended to be seen by parents as more useful than statutory services.
Consistent with previous research, 14 parents reported that accessing leisure activities was challenging due to their child's sensory difficulties. Therefore, local disability events were particularly valued in enabling families to be part of a social group. For parents themselves, being able to socialize face-to-face or online with others in a similar situation was an important source of support and advice.
As found previously, 28 parents appeared to find support groups more useful than advice from professionals, who often lacked autism expertize or understanding of their situation. Furthermore, contrary to the suggestion that parents of children with autism no longer experience blame from professionals, 41  although there are substantial regional differences, 48 and mental health support for children with autism is identified nationally as a key gap in service provision. 49 In line with this, parents in this study reported difficulties gaining access to mental health services for their child due to high referral thresholds, with requests for support rejected even where children had exhibited self-harm behaviours.

| Strengths and limitations
The use of a visual timeline alongside qualitative interviews enabled rich data to be gathered, providing a detailed insight into parents' experiences of support at different stages of their child's journey with autism. The relatively large sample size (diverse in terms of child age, location and relative deprivation) allowed a range of experiences to be explored. However, although participants were from three regions of England and Wales and a mix of rural and urban localities, most were located in Wales and no inner-city areas or regions of Northern Ireland or Scotland were included. In addition, few participants were MILOSEVIC ET AL.
| 1127 from ethnic minority backgrounds-a factor that could significantly affect access to support, 50 thus limiting the applicability of findings.
Most interview participants were mothers of children with autism, some of whom described support from 'other Mums' as being vital.
Therefore, it would be interesting to investigate the support experiences of fathers in more depth. Exploring children's own experiences, and experiences of siblings, would also provide an important (and currently little explored) perspective on the value and utility of different forms of support. As interview participants were parents/carers of children enroled in a randomized controlled trial of sensory integration therapy, those whose children received the therapy experienced additional, specialized support. To mitigate this, this interview study focused solely on the usual care families experienced outside the trial. Recruitment to the trial was via health, social services or education professionals, or self-referral, therefore families in contact with support services and those seeking additional help for their child are likely to have been over-represented in this interview study.

| Recommendations for policy and practice
In terms of the period before autism diagnosis, training for professionals working with families (such as health visitors, psychologists and speech and language therapists) should raise awareness of the signs of autism, to improve early recognition and support, as recommended by the National Institute for Health and Care Excellence. 51 Ensuring this support is provided in a nonjudgemental way may help reduce barriers to parents accessing statutory services.
Following diagnosis, a clear pathway of support should be set out in local and national policy, to facilitate equitable access to services, regardless of families' resources and locality. Longer term, it is important that parents are signposted to ongoing sources of support in the community, such as local disability and parent groups, as these are highly valued by those who utilize them. Children should also have access to support from professionals specializing in autism. In particular, there is a need for timely mental health provision tailored to the needs of children with autism.

| CONCLUSION
This study provides an in-depth insight into experiences of support for children with autism and sensory processing difficulties. Provision