Family perspectives on educational experiences, post-school needs, and quality of life of young autistic adults

Abstract

This exploratory pilot study examined perspectives of family members of young adults with a diagnosis of Autism Spectrum Disorder regarding the experiences, and level of support their child or sibling received, throughout their years in general education, into early adulthood, and their perception as to the young person’s overall current quality of life. Semi-structured interviews were conducted with four family members (mainly mothers) of autistic young adults and analysed thematically. Family members were selected to capture more accurately the nature and extent of supports in place in the general education system during the autistic person’s childhood years. Where relevant, perceived challenges pertaining to third-level education were identified including social, residential, and academic supports. The lack of support with transitions from secondary to third-level education and into the workplace was highlighted. Barriers to employment included communication and social interaction difficulties alongside perceived employers’ prejudice. The pilot findings highlight the need for support throughout the general education journey and a continuation of accessible support services beyond the age of eighteen for autistic individuals. The study will be extended to gain the perspective from the young person’s point of view of services and supports in tertiary education and/or employment.

Keywords:

• ASD
• quality of life
• education
• service needs
• family
• adults

Autism Spectrum Disorder (ASD) is a pervasive, lifelong neurodevelopmental disability. It is characterised by difficulty in social interaction and social communication, and by restricted or repetitive patterns of behaviour (American Psychological Association (APA) 2013).¹ The latest figures for Ireland suggest an estimated prevalence rate of 1–1.5% for the purpose of planning policy and services. (Department of Health 2018). Previous research into ASD has focused primarily on childhood, with fewer studies examining adolescent and adulthood life stages. Within the limited empirical base, research indicates that autistic adults demonstrate poorer quality of life (QoL) outcomes relative to neurotypical peers (Ayres et al. 2018; Billstedt, Gillberg, and Gillberg 2005; Lin and Hunag 2017; Shattuck et al. 2012).

Appropriate and specialised support can enhance QoL among autistic individuals by minimising psychological distress (Tantam 2000) and facilitating greater opportunities for independent living, employment, and social relationships (Tantam 2003). QoL is taken to represent a multi-dimensional concept grounded on the stability of an individual’s physical health, psychological well-being, autonomy, social relationships, personal beliefs, and relationship to aspects of their general environment (WHOQOL Group 1995). ASD is a lifelong condition, therefore supports are required throughout the lifespan (Doherty, Fitzgerald, and Matthews 2000), dependent on the needs of the individual. Access to appropriate services should be an integral right for all autistic individuals irrespective of age. Nonetheless, there has been a dearth of research on service provision for autistic adults, with supports during the early years typically comprising the focus of most investigations. The term ‘services’ and ‘supports’ are used interchangeably in this paper to reflect important inter-related features of provision for young autistic adults.

Family members’ perspectives on education needs and supports is an area of research that has received limited attention, despite such significant others playing a central and continued role in young autistic adults’ lives (Poon, Koh, and Magiati 2013). There are some exceptions to date. Graetz (2010) surveyed family caregivers of autistic adults in the United States regarding their satisfaction with available services and perceived opportunities for socialisation, employment, and residential living. Neary, Gilmore, and Ashburner (2015) quantitatively explored parents’ perceptions of the service needs of their post-school-aged autistic young person and the extent to which these needs were being met by various services in Australia. The results collectively revealed that parents desired greater support for their adult child in relation to the living arrangement, employment, education, and accessing supports.

This study attempts to build on prior quantitative research by utilising qualitative interviews to explore family members’ perspectives on service provision for their young autistic adult child/sibling at present and throughout their previous school years, and the perceived contribution of such services to the overall present-day QoL.

In line with prior research, education, employment, and availability of supports in Ireland will be initially explored as key aspects that collectively contribute to QoL. This study will focus on mothers’ and sibling’s perspectives on these factors and on the perceived QoL of their autistic family member, as the immediate family has been, and will likely remain, an integral component in the young person’s life.

Education and employment: supports and challenges

As stated, education and employment opportunities have a key bearing on QoL. There are supports available in Ireland, however many tensions and challenges present within the system. A starting point for receiving a diagnosis in Ireland is to undertake an Assessment of Need (AON), yet this process is subject to significant delays. The delay in receiving a diagnosis of ASD and co-morbidities such as intellectual disability² crucially impacts on receiving therapeutic services and can have a negative bearing on securing a school placement.

The range of school placements for autistic pupils in Ireland are as follows according to National Council for Special Education: 86% of autistic students are enrolled in mainstream schools whereby: 63% of all autistic students attend mainstream classes; whilst 23% attend special classes in mainstream schools, and a further 14% attend special schools.

It is known that the school trajectory within general education presents difficulties for autistic students, intensified at the transition into second-level environment. A mainstream secondary school environment can be chaotic, with frequent classroom changes and corridors to navigate, and different teaching styles with which to adapt. These features are particularly challenging for young autistic people who typically prefer routine, predictability, and order (Symes and Humphrey 2011). Students with autism can also experience bullying, school exclusion, and isolation (Cappadocia, Weiss, and Pepler 2012), as well as difficulties related to the increase in curricular complexity (Shevlin et al. 2009).

The transition from mainstream second-level to third-level education, where this option is available to the person, is challenging and maybe the most life-altering experience for a young autistic person. Typically, those individuals diagnosed with Level 1 Autism in the DSM V or prior to the introduction of DSM V those diagnosed with Asperger’s Syndrome have a higher academic performance and consequently, third-level education is a viable post-secondary school aspiration (Roberts 2010).

It is likely that the incoming generation of third-level students will comprise a higher percentage of individuals with autism (Gurbuz, Hanley, and Riby 2019). This is due to the prevalence rates of diagnosis increasing and the higher numbers of autistic students achieving the entry-level standards required for the third level, in addition to broadened access routes to the third level. While most, if not all, third-level institutions in Ireland have accessible disability services available for autistic students, the general difficulties encountered by such individuals may nonetheless contribute to high college dropout rates (Gurbuz, Hanley, and Riby 2019). A lack of appropriate supports and a focus on cooperative group activities, in tandem with unstructured settings, combined with difficulties navigating complex social situations can be extremely challenging for young autistic people entering college, leading to high levels of anxiety (Gurbuz, Hanley, and Riby 2019; Hees, Moyson, and Roeters 2015). Indeed, the hallmark difficulties which can present in social situations for autistic individuals are often the main concern for parents when their child is transitioning to college (Auger 2013).

Longitudinal research indicates that autistic adults often experience poor QoL outcomes with independent living and full-time employment uncommon for such individuals (Billstedt, Gillberg, and Gillberg 2005). The unique social, communication, and behavioural characteristics associated with ASD, therefore, underscore the need for appropriate supports to help autistic individuals achieve employment success (Hendricks 2010). In accordance, Stewart (2008) revealed that only 15% of autistic people are in full-time employment in the UK. Communication and social interaction difficulties characteristic of ASD account for the biggest vocational barrier in an unsupported work environment (Hagner and Cooney 2005).

The current small-scale study seeks to qualitatively explore perspectives of four female family members of young autistic adults regarding the level of support, including services, that their child, or in one case a younger sibling, received during their general education and into post-secondary years, and the perceived contribution of such supports to the autistic person’s overall crudely estimated QoL. By employing open-ended lines of questioning, it is hoped that this study will contribute to the limited body of research exploring QoL among post-general school-aged autistic adults. The first focus was on family members to look back and capture the supports put in place for the child in the general education system. A follow-up study is planned to glean the experience and supports in place from the autistic person’s own perspective.

Methods

Research design

An exploratory research design was implemented with semi-structured interviews utilised to collect data from the participants. Gillham (2000) posits that face-to-face interviews are effective in research where the depth of meaning from the personal language is of significance and the primary aim is to acquire insight.

Participants

In line with previous descriptive qualitative research examining experiences of ASD (Carrington and Graham 2001), semi-structured interviews were conducted with four participants, who met the inclusion criteria outlined in Table 1 The sample comprised three mothers, and one older sibling, of an individual with a diagnosis of ASD. An overview of participant demographic information is provided in Table 2.

Table 1. Inclusion criteria for the selection of participants.

• The participant’s family member must have received a diagnosis of ASD according to the DSM V or a subtype of ASD according to the earlier diagnostic criteria outlined in the DSM IV.

• This diagnosis may have been provided by a Psychologist or Psychiatrist alone or in conjunction with other healthcare professionals such as a Speech and Language Therapist.

• They must also have been living in Ireland for more than 15 years, to ensure sufficient exposure to English to warrant fluent acquisition of the language.

• The participant’s family member must also have started, completed or left second-level education.

• The family member must be at least eighteen years of age.

Table 2. Participant information.

Participant Pseudonym	Alison	Beth	Caroline	Deirdre
Relationship to a young adult with ASD	Older sister	Mother	Mother	Mother
Age of young adult with ASD	21	18	18	19
Sex of young adult with ASD	Female	Female	Female	Male
Official diagnosis of a young adult with ASD	High Functioning Autism	Asperger’s Syndrome	Moderate Autism	Asperger’s Syndrome
Co-occurring diagnosis of a young adult with ASD	None	None	Intellectual disability	Dyspraxia

Procedure

Ethical approval to conduct the study was obtained from the Research Ethics Committee, in the School of Linguistic, Speech and Communication Sciences within the University. Informed written consent was obtained from participants and confidentiality of data was maintained with participants allocated pseudonyms. Participants were informed that their participation was voluntary, and they were free to withdraw from the study at any point without penalty. Participants were recruited through a combination of convenience and snowball sampling methods.

Snowball sampling is appropriate for use in explorative studies involving ‘hidden populations’ that can be challenging to contact (Atkinson and Flint 2001). The participants for this study could be considered a ‘hidden population’ as many autistic individuals in Ireland are no longer involved with services after the age of 18, and their family members by extension, are difficult to reach.

Initial contact was made with 18 support groups, ‘online blogs and/or social media forums’ for family members of autistic individuals. The secretary/manager of these groups was emailed an information sheet containing details about the study and invited to forward the email to their service users. The email also welcomed recipients to forward this information to any other potential participants they considered appropriate for the study.

A follow-up email or phone-call was made to the same contacts after a two-week waiting period. Four participants subsequently initiated communication with the researcher identifying interest in taking part in the study. The interviews took place in a location of convenience identified by each participant, ranging from the participant’s home, participant’s workplace, University Campus, and a local coffee shop. Informed written consent was obtained from participants on arrival. All interviews lasted approximately 40 minutes. An interview schedule was developed based on prior research (Neary, Gilmore, and Ashburner 2015) which explored parent’s perceptions of their post-school-aged high functioning autistic young person’s needs. Neary, Gilmore, and Ashburner (2015) sought to identify the provision of appropriate supports necessary to increase young autistic adults’ QoL, which they defined in relation to five multi-dimensional aspects: (1) the education system; (2) available services; (3) recreational activities/interests; (4) accommodation situation; and (5) employment experiences and opportunities. The quantitative survey items used by Neary, Gilmore, and Ashburner (2015) were incorporated into the semi-structured interviews utilised within the present study, to facilitate an insight into the autistic adult’s overall QoL. The participant’s responses were transcribed in real-time to document any facial expressions, pauses, or other paralinguistic features that could ultimately contribute to the informative value of the interview. Interviews were also recorded using a dictaphone.

Data analysis

Each interview was transcribed verbatim. Transcription comprises a crucial stage of data analysis within interpretative qualitative methodology as it allows familiarisation with the data (Bird 2005). Interviews were written using naturalised transcription method to document the speech as it was spoken, rather than filter it through the transcriber (Oliver, Serovich, and Mason 2005). The data were analysed using a realist method in an inductive way (Braun and Clarke 2006). This approach reports the meaning and reality of the participants’ personal family experiences expressed throughout the interview.

Transcripts were analysed thematically to obtain a rich account of the complexity of the data (Braun and Clarke 2006). Thematic analysis comprises several steps for identifying, analysing, and reporting patterns across a dataset. The data were firstly read and re-read several times before allocating codes to salient topics. Coding is an integral step in the thematic analysis as it groups the data into the most meaningful and potent aspects of the data (Tuckett 2005). Searching for themes involved examining the codes of broader patterns of meaning both within and across transcripts. The coding process was not dictated by vivid extracts, but rather through careful analysis of the recurrent and relevant subject matter. The themes were then reviewed, refined, defined, and named.

Findings

Each participant gave a rich account of their family member’s past life experiences, current situation, and thoughts on what the future may hold. Consistent commonalities emerged among the four interviews which were then divided into five main inter-related themes: diagnostic process, education, services (to date), post-school needs (services required in adulthood), and family perspectives (on QoL), which are discussed below.

Main theme: diagnostic process

Sub-theme: age of diagnosis and diagnostic labels

The age at which an individual receives a diagnosis is important as it dictates the initiation of appropriate supports and services both within and outside school. Three out of the four participants stated that regression in their family member’s language skills at an early age instigated their involvement with the assessment and diagnostic process. Despite this early involvement for three of the participants, the ages at which the family members received their official diagnosis ranged from 3 to 11 years of age.

There was an assumption among some participants that the severity of the young person’s presentation appeared to sometimes determine how quickly they were seen for assessment. Deirdre believed her son had a lengthy waiting time stating her view that unless the child ‘was violent or had an issue in that kind of way’ then they ‘wouldn’t be seen for quite some time’. She revealed that the waiting list for her son was ‘two years’ and it was her view that this was because he ‘wasn’t aggressive or lashing out so it took even longer’.

In contrast, Caroline stated that her daughter who also has a comorbid diagnosis of an Intellectual Disability, ‘was very lucky’ to be seen through Early Intervention and received a diagnosis at ‘around three’ years of age.

All the participants indicated that their family members were provided with an official diagnosis of a subtype of ASD according to the DSM IV criteria. These previous diagnostic labels are not categorised in DSM V (APA 2013).

Three of the four participants expressed that their family members received more than one diagnostic label throughout their engagement with the diagnostic process. Alison described her sister’s experience:

they went to a speech and language therapist you know she had the assessment and she had I think it was an expressive language delay and receptive language delay, and she was offered a diagnosis in that (…) and then she went to the doctor and was diagnosed with PDD-NOS [Pervasive Developmental Disorder-Not Otherwise Specified] (. .) and then she went to the [hospital]when she was four and was offered a diagnosis of ADHD [Attention deficit hyperactivity disorder] (…) and then it was when she was ten, she was diagnosed then [with High Functioning Autism]

All the participants indicated that their family members needed a formal diagnosis or recognised difficulty reported in written format to avail of certain services. This was highlighted by Deirdre who explained the process her son had to go through to access required supports in school prior to receiving an official diagnosis:

He had seen someone through the primary school he had seen NEPs [National Educational Psychological Service] (…) eh now at that stage they knew there was an issue, but they couldn’t identify it so she put him down as dyslexic even though he’s not dyslexic in any way shape or form, just so he could have a label so he could avail of some sort of service.

Main theme: education

Sub-theme: mainstream schooling

All four participants revealed that their autistic family members attended mainstream schooling for most, if not all, of their primary and secondary school education. Descriptions of primary school ranged from being ‘ok’, to being something that the individual ‘enjoyed’. A resounding finding across all participants was that the commencement of mainstream secondary school was associated with an increased level of difficulty and psychological stress for the young autistic person. Deirdre discussed the struggles experienced by her son:

he went into secondary school and he didn’t speak for the first year, eh. .because he was just knocked back, he couldn’t’ get over it. He thought once he got through primary that it would be different in secondary, but for him it was worse because there was teenagers there and he just. .couldn’t (bare the other teenagers)

Beth highlighted the lack of support available for her daughter in secondary school:

when she went into first year I wanted somebody in place for her in first year just to help her with the transitions, and they kept saying they don’t have any help for her so she went into first year and she was completely lost, she was just drowned

Caroline discussed her decision to remove her daughter from mainstream secondary education and enrol her in a special education class (within a mainstream school) due to there being ‘too much changing around’ and her class setup being ‘too intense’.

Two of the four participants commented on the lack of training received by mainstream school teachers for students with additional needs. It was reported that teachers in both an ASD-specialised class within a mainstream school and mainstream secondary school lacked competence in supporting autistic individuals. This absence of proficiency was felt to have contributed to the young person’s heightened stress levels in secondary school. One parent commented on how she had to educate the school principal and ‘explain what Aspergers was’. However, the participants made it clear that their views were that responsibility for this did not lie with the teachers themselves, commenting that ‘the teachers gave 110% in the school’ and that they ‘could not fault them’. The issue was believed to be that the teachers were ‘not trained well enough’ for students with additional needs.

As Deirdre articulated:

teachers don’t get any training on  …  on  …  .additional needs in education, so give them their due they’re having to learn as they go along and they’re relying on you to tell them how it is

Sub-theme: friendships in school

All participants highlighted difficulties with social interaction revealing that their autistic child/sibling had ‘very few’ if any, friends throughout their schooling. Some participants remarked, however, that their family members ‘didn’t require friends’ and that ‘it was easier without them’. Beth described how her child experienced negative experiences of isolation and bullying:

No I don’t think so [enjoy school], she got bullied now a lot in first year to the degree that I threatened the guards and I was going to pull her out but then there was no point. She didn’t even realise she was being bullied. It was someone else who came to me and told me she was being bullied.

Sub-theme: third level education

For three of the four participants, third-level education was reported to be a post-school option for their autistic family member given their demonstrated academic abilities. However, several barriers to third-level education were identified. Alison highlighted the lack of academic support provided to her sister:

She gets a massive amount of support from my parents with that and the university I don’t think has been massively supportive to her …  but in having said that she’s not very willing to accept support

Whereas Beth spoke about the challenges pertaining to social requirements and residential support:

Now she’s great academically but socially she’s just not ready, so we’re going to apply but we’re going to defer it for a year (…) yeah I don’t think she’s ready for it  …  she’d have to go into digs as well. She’d have to move in with a family, she’s definitely not going to be able to do it on her own.

Deirdre highlighted the difficulties accessing third-level education:

I have a really big issue though with colleges because colleges have the fantastic DARE [Disability Access Route to Education] programme, but you have to go through normal matriculation to get into college to be able to avail of DARE (…) it’s there but to get to it you’ve to go through the stressful leaving (Cert) [State Examination]. You have to cross a river to get to it and you can’t swim and that’s the problem

The evident lack of transitional support makes the move from secondary to third-level education a challenging concept on multiple levels. A recurring notion expressed by participants was that their young adult family member was at a ‘point of transition’ however, the process of maturation into adulthood and entry into third-level education if desired, does not occur as seamlessly for autistic individuals compared with neurotypical peers. One participant described it as being like ‘a square peg in a round hole, and it doesn’t suit him … the world … the education system’.

Main theme: services

Sub-theme: satisfaction with services (availability and quality)

The participants identified several services and support that were available to their family members following their diagnosis of ASD. All participants reported that their family members engaged with Speech and Language Therapy (SLT) at some point over a short, or extended period, which they found to be beneficial.

As Caroline stated:

the only one that would have been ongoing would have been speech and language. I don’t think she’d be as well-adjusted if she didn’t have them [services] and the fact she got them early is key

A variety of public and privately procured services availed of reported by participants included Psychology, Occupational Therapy (OT), Physiotherapy, Applied Behavioural Analysis, Tomatis Therapy, and Hippotherapy. Most participants also indicated that their family members engaged with various social groups or support groups. Overall, the four participants agreed that where either public or private services were provided these supports were beneficial to their family members; with one participant describing them as ‘absolutely brilliant’.

Sub-theme: provision of state services

All participants indicated that in the case where there was some provision of State services during childhood for their family member, this was ‘peeled back’ or non-existent upon reaching the age of eighteen. As Alison explained:

my experience of it is that it has been quite lonely  …  em  …  you turn eighteen and then there’s nothing and you know you hear the analogy it’s like falling off a cliff but that’s what it is like and it is a very lonely place

Furthermore, it was noted that the provision of available services was inconsistent for participants even during childhood years, and these resources were ‘stretched’. Many participants reported that less resourced services were provided on a consultation basis for their family member, with no follow up available. One participant commented that following assessment you received ‘your report with stupid generic recommendations’ and ‘you’re sent off’ (with no services available).

All four participants were also of the emphatic opinion that service continuation into adulthood ‘would be useful’ to their family members and that services should be more readily accessible to autistic individuals past the age of eighteen. Participants expressed that ASD is a lifelong condition and at this ‘point of transition’ in their family member’s life they will find themselves in ‘more complex situation’ than previously as children. One participant also made the important point that ‘not everyone is diagnosed as a child’ and that there is ‘nothing for them’.

Sub-theme: perceived prioritisation of state services

A common finding among the participants was the opinion that individuals who are diagnosed with ‘Aspergers or Autism Level 1 ‘do need a lot of support’ and often, the experience was this support is not provided. Caroline expressed that her daughter ‘will be supported for the rest of her life’ due to her co-occurring diagnosis of I.D. It was stated elsewhere ‘if you don’t have an intellectual disability, there’s nothing’. Deirdre cited the example of her son being supported throughout his adolescence because he was in crisis and ‘suicidal at that stage’ and was seen ‘immediately on those grounds’.

A lack of forward planning in terms of services was highlighted by participants. As one individual stated, ‘any service or support needs to progress because the person hasn’t fallen off the face of the earth’. There was a collective agreement among the participants that the national Government and Health System need to look ‘very seriously at supporting young adults without an intellectual disability’ who may have very restrictive ‘social problems’ that impact their ability to integrate fully into society. This is likely to reflect the profile of the autistic family members for the study where most participants had family members consistent with ASD Level 1 diagnosis.

Main theme: post-school needs

Sub-theme: vocational support

One of the most salient needs identified by participants for their post-school-aged family members was vocational support along with support in cultivating independence skills. A general perception discussed was that while autistic individuals may have ‘the ability to learn’ they are not being supported adequately to, in the words of one participant, ‘get jobs and function as an adult’. Deirdre expressed her disapproval when her son was encouraged by a curriculum vitae consultant, within an ASD service, to apply for state support in the form of disability benefit. She perceived this as ‘an out’ for her son and an excuse for him to not pursue a career: ‘we had spent so many years trying to make [him] understand that [he’s] not disabled, so why is he applying for a disability benefit?’

Sub-theme: barriers to employment

When probed for their perceptions of the main barrier to employment participants provided a range of responses, including their family member’s anxiety, inability to process information quickly, and difficulty working on their own initiative and recognising social nuances. These intrinsic factors were felt to be something that an employer ‘won’t be able to look past’. Furthermore, people’s perception of disability and the education system were also highlighted as barriers to employment which lie extrinsically to the young person themselves, as discussed by Alison:

She is just as qualified and she does have these great skills, but I do think there is so much prejudice there that it won’t be that simple, getting over those prejudices in the first instance I think would be a massive massive barrier

Main theme: family expectations

Each participant considered the QoL of their autistic family member to be ‘moderate’ or ‘good’. The general finding was that each participant perceived their family member to be ‘happy’ and ‘content’ with their lives. However, when asked if they were to compare their family member’s life situation to the desires and expectations they would have for a neurotypical individual, the consensus was in their view a neurotypical individual would not be as content with a similar standard of living. This sentiment was explained by Beth:

to me looking in as somebody else and she wasn’t my daughter I’d say ‘Oh god love her she has nothing going on in her life’, but that is her life and the way she [likes it]

The concept of grieving arose from two participants, both mothers. This emotionally loaded finding indicated from a parental point of view they ‘grieved [their] expectations’ that they would have had for a typically developing child and that they ‘grieved the loss of the child [they] were expecting’.

As Caroline stated: ‘it’s like mourning someone who’s not dead, you kind of em  …  there’s no expectations, you know she’ll never get married. She’ll never be able to live independently’.

Contrasting this response, Alison, recognising a ‘grieving process’ that her parents went through, described that, as a sibling, she did not experience the same emotional reaction, explaining that ‘they had spent thirty years having never heard of it and suddenly there was this thing thrust upon them (…) whereas from my perspective it’s normal’.

Sub-theme: the future

Each participant identified several aspirations that they had for their family member which ranged from simple desires such as ‘happiness and continued good health’ to more complex wishes such as ‘an organic friendship’ and to ‘feel accepted’. Beth emphasised her desire for her daughter to achieve employment: ‘If she could just go into work, do her bit and get on with it and be happy, that’s all I’m looking for’. Whereas Deirdre expressed her wishes for her son to become an integrated part of society:

Definitely that he would be in society, he’s got a lot to give and he’s a great individual. I’m very proud of him and how he has conducted himself through the trials and tribulations he’s had very early on and there’s been a lot

The participants’ responses to what advice they would give to other families, similarly resulted in a variety of recommendations such as advising other families to ‘accept them for what they are and love them’. One piece of advice which was a recurrent finding across many of the participants was to ‘educate yourself’ as ‘you are your child’s advocate’.

As Deirdre stated:

you must know about it, how it works, about the supports systems, the state systems, everything. Because you know your child better than anyone and you are your child’s best support

Discussion and implications

While participants outlined the services accessed by their autistic child/sibling in positive terms, they were dissatisfied with the lack of availability of such services, indicating that in their opinion those with ASD without a diagnosis of an intellectual disability were given lower priority; unless considered to be a danger to oneself or others. It is important to note here that this opinion was provided retrospectively, and there was no evidence within this small-scale research to support these statements. In some cases, there were no services available during childhood. The evidence is that there are issues with receiving timely and adequate diagnosis and services regardless of a child’s level of needs.

Under the Disability Act 2005 where an AON is conducted for a child, there is a compliance with the mandated timeframe of only 9% in the latest figures, which relate to 2018/2019, from the Health Services AON for people with disabilities (Health Service Executive 2019). At the time of writing HSE figures reported, in response to a government parliamentary question, that 6058 assessments of need were overdue.

Furthermore, an investigation by the Ombudsman for Children’s Office (2020) revealed that parents reported their child had waited a number of years to access an AON via early intervention services (for children aged 0–5 years), however, their child had aged out while they were on this waiting list. Their child was then placed at the bottom of a new AON waiting list for school-aged children. This further prolonged their child’s delay in access to an assessment of their needs thus removing the window of opportunity which comes with early intervention.

Given this is a proposed pathway a parent might follow in attempting to obtain a diagnosis, or towards a diagnosis of autism, it is of concern that the compliance is so low. It ultimately delays diagnoses, crucially impacting on receiving services. Even when a diagnosis is received there are lengthy waiting lists for the respective services, such as OT, SLT and Psychology, where available, denying children the opportunity of timely intervention.

In terms of services citing OT, by way of an example, the latest available figures from the Health Service Executive (2019) reveal that over 21,000 children under the age of 18 are waiting a first time OT appointment, with close to half (49%) of these children waiting in excess of 1 year. The National figures are in fact higher, as there were two Local Authorities (comprising three counties) not included in the data. Similarly, in the case of SLT it was recently revealed by HSE in response to a government parliamentary question that 19,864 people (including children and adults) are waiting for an initial assessment for SLT, including 527 waiting more than 2 years.

Participants in this research study did not cite issues with the family members experiences during Primary school, however, there are additional accounts of insufficient numbers of specialised school places (special classes or special schools) for autistic children to meet the demand in some areas, routinely reported through various advocacy, political and media sources. Furthermore, there are accounts that reveal challenges within the General Education system. Hick et al. (2018) undertook a detailed analysis of Initial Teacher Education (ITE) programmes in Ireland, in terms of their respective focus on inclusion. ITE programmes are critical in terms of providing a foundation for inclusive teaching, yet the preparation of teachers in ITE in Ireland is found lacking in the area of inclusive education both in terms of programme content and work placement. Hick et al. (loc. cit.) concluded that there is a need to embed inclusive pedagogy across the ITE curriculum and NQT induction processes as a framework. Of concern, teacher educators reported feeling insufficiently prepared to develop work in this area.

The problem of availability or otherwise of necessary services and supports also concerns the Education system. Sections 3–13 of the Education for Persons with Special Education Needs Act, 2004 (EPSEN Act) which concerns the assessment of special educational needs in order to support a child’s educational plan, have yet to be commenced.

Roddy and O’Neill (2019) provided an economic analysis of costs among 195 families with 222 autistic children aged between 2 and 18 years of age in 2014/2015 in Ireland. The findings show over 74% of children did not receive one or more services in the previous 12 months. The average debt per year per family was €3259. The study illustrates that there is a significant level of unmet need and economic hardship among families with autistic children, and highlighted issues of capacity and geographic inequity.

Our study uncovered the lack of services available to autistic individuals beyond the age of 18 years was an overarching concern with participants comparing the sense of abandonment and helplessness experienced to that of falling off a cliff. It is particularly poignant that the reported cessation of state-provided support occurs at a point of transition among adolescents as they reach the threshold of adulthood. While autistic adults may not require the support of services as routinely, in cases where such supports were available, as they did as children, the need for some level of accessible reassurance through services must be addressed and implemented, not merely reserved for a time of crisis.

The current tentative findings resonate with prior studies, which underscore transitional support, specific vocational guidance, independence, and social skills training as the supports and services as integral to ensuring a good QoL among young autistic adults (Gurbuz, Hanley, and Riby 2019; Neary, Gilmore, and Ashburner 2015; Poon, Koh, and Magiati 2013). Reflecting on the educational experiences of their autistic child to date, participants identified the primary school as a somewhat positive experience in their individual experiences. In stark contrast, and in line with previous research the commencement of secondary school was identified as a tumultuous experience for the adolescent autistic student (Symes and Humphrey 2011). The bustling environment, stringent educational assessment systems, and lack of specialist education training among educators were identified as key barriers to the autistic young person. The Task Force on Autism (2001) in Ireland previously issued explicit guidelines for staff working with autistic individuals stating that staff should be trained and knowledgeable about ASD. However, these recommendations were not reflected by participants and their reported experience of their autistic family members. Rather it was noted that secondary school teachers, even those within a specialised ASD class, did not appear to have any specialised training. Moreover, the school system was not prepared to adapt to the specific needs of an individual with ASD. These findings underscore the need for all educational staff to be adequately trained on ASD, thus it is recommended that teaching strategies are devised and implemented, at both undergraduate level and as part of continuous professional development. Moreover, with the introduction of the DSM V criteria, the construction of the student’s individualised education plan (IEP) is of particular importance as this allows for communication between multi-disciplinary service teams, educators, and the student and their family, to identify learning strategies that will work best for them. The Education of Persons with Special Education Needs (EPSEN) Act 2004, however, is not yet fully commenced including the piece on IEPs.

In addition, it must be considered whether the state examinations offer a fair and equitable assessment system. Third-level education and future employment were identified as being central aspirations for the family members of three participants, however various challenges for young autistic people were outlined. Resonating with previous research the need for academic support, difficulties with social situations, and apprehension about their family member’s safety were identified as key parent and sibling concerns (Auger 2013; Griffin, McMillan, and Hodapp 2010; Neary, Gilmore, and Ashburner 2015). More comprehensive support is therefore required on behalf of third-level institutions nationally to combat barriers such as academic struggles, residential safety, and social exclusion. In relation to their child’s/sibling’s future, participants provided a variety of aspirations and wishes ranging from abstract concepts such as ‘feeling accepted’, to more concrete desires such as ‘having a friend’. A recurring wish identified by the participants was a desire for their family members to be included fully in society and achieve employment, goals perceived to be beneficial to the young person’s confidence, self-esteem, and overall QoL. Barriers to employment for young autistic adults were perceived by family members, however, including difficulty processing complex commands, poor awareness of social cues, and employers’ prejudice. These findings collectively highlight the substantial need for career guidance for autistic individuals alongside support with social skills to promote a successful post-school transition. Previous research indicates that employment provides an opportunity for young autistic adults to promote self-respect, self-esteem, and positively impact cognitive functioning and overall QoL (Taylor and Seltzer 2011; Walsh, Lydon, and Healy 2014). Thus, it is recommended that employers and society, in general be made aware of the strengths and difficulties of autistic individuals in the workplace and how to support autistic people. This could potentially contribute to creating a more accepting and educated society and ultimately enhance QoL outcomes for autistic people.

Limitations and future directions

Despite having gone through some testing experiences and anticipating further struggles in years to come, each of the participants concluded that, from their perspective, the QoL of their child/sibling was moderate to good. This rating was based on the participant’s own personal perceptions considering education, employment, and available services. Each participant viewed their family member to be content with their own lifestyle. Notwithstanding this, it was acknowledged that an unfamiliar onlooker evaluating the young person’s QoL may have an entirely different perspective. A key limitation of this study is that the QoL of the young autistic adult was estimated by a family member as opposed to the individual providing this rating themselves. It is not possible to ascertain that such views accurately represent perceived QoL from the perspective of the autistic individual. This crude estimation, rather than deploying a measure to rate and assess QoL, is a further limitation of the current study.

Another limitation of the study is that the findings cannot be generalised to represent the views of family members of young autistic adults in Ireland as these findings embody the sole opinions and experiences of four individuals only. The participants also were mainly family members of autistic people with a diagnosis consistent with higher functioning Autism/Aspergers/ASD Level 1. Nevertheless, given the dearth of research in the area such anecdotal information is useful. Each participant provided an account of their family member’s experiences which were steeped in emotion and conviction, thus providing rich data. Eliciting sibling and parental perspectives and experiences can be of value by aiding identification of key service provision priorities for young autistic adults and their families (Poon, Koh, and Magiati 2013). Nonetheless, future research efforts should elicit perspectives from autistic adults, regarding personal evaluations of their own standard of living and services desired beyond the age of 18, with the aim of improving the lives of autistic people (Chow et al. 2017). Developing interventions based on family perspectives alone, without giving young autistic adults a voice is unlikely to fully support and promote QoL outcomes among such individuals (Kim 2019).

Acknowledgments

The authors would like to thank the participants who dedicated their time to this study and made this research possible.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Notes on contributors

Béibhinn Walsh

Béibhinn Walsh is a Speech and Language Therapist in St. James Hospital, Dublin 8, Ireland. She has worked clinically as a Speech and Language Therapist since graduating from Trinity College Dublin in 2017.

Rhona Dempsey

Dr. Rhona Dempsey is a Visiting Research Fellow in the School of Psychology, Trinity College Dublin. Her research interests concern Autism Spectrum Disorders and Quality of Life.

Margaret Lawler

Dr. Margaret Lawler is an Assistant Professor of Psychology in the Discipline of Occupational Therapy, School of Medicine, at Trinity College Dublin. Her research focuses on young people’s health, wellbeing, and behaviour change.

Notes

1 The new diagnostic criteria for ASD are set out in Diagnostic Statistical Manual version V and have been rearranged from the most recent previous manual (DSM IV) into two areas: (1) social communication/interaction, and (2) restricted and repetitive behaviours. The diagnosis is based on symptoms, currently or by history, in these two areas. Recent changes from the DSM IV criteria to the latest version of the diagnostic manual, DSM V indicate that the diagnosis is called ASD, and there is no longer sub-diagnoses (Autistic Disorder, Asperger Syndrome, Pervasive Developmental Disorder Not Otherwise Specified, Disintegrative Disorder). Another difference is that in DSM-IV, symptoms were divided into three areas (social reciprocity, communicative intent, restricted, and repetitive behaviours). The latest diagnostic criteria also outline the level of support required for those symptoms and reflects the impact of co-occurring specifiers such as intellectual disabilities, language impairment, medical diagnoses, and other behavioural health diagnoses (APA 2013).

2 Estimated rates of comorbidity of intellectual disability in people diagnosed with ASD vary widely and are influenced by the intelligence tests used and the samples of people involved. One recent study estimates that approximately one-third of autistic children also have an intellectual disability (IQ score ≤ 70), based on 2016 health records of 8-year old children in US. (Centers for Disease Control and Prevention 2020).