‘It wasn’t the strategies on their own’: Exploring caregivers’ experiences of accessing services in the development of interventions for autistic people with intellectual disability

Not getting your hopes up

Most families reported significant difficulties obtaining support for their child. The expectations that families had of the type of support they would be offered often contrasted the actual service they received:

it was almost like there’s a diagnosis and instead of, at that point I thought everything would kick into gear, [. . .] but in fact the opposite happened, in that the box had been ticked and then he fell off.

With many families reporting experiences of expectations that were not met, the families who expressed positive experiences often framed these within the context of ‘luck’:

I have been lucky in the sense that X has a really good paediatric consultant, and she’s very supportive and she does listen to what I say, [. . .] she’s always acted upon what I am saying.

It is possible that the sense of ‘luck’ resulted from the generally unmet needs of families accessing services, leading to a perspective that positive experiences were improbable, and expectations should remain low. The inconsistency many families reported appeared to contribute to the improbability of positive experiences, suggesting even once receiving support, staff turnover or service limitations may lead to inconsistent support:

usually in the NHS it is very sort of like infrequent and you know as we all know for our children it’s consistency and continuity, you know, keeping things in a regular pattern that really helps maintain that you know regulate their mood and sort of anxiety.

As highlighted, routine and consistency are perceived as essential for autistic children with ID so inconsistent support creates an additional concern. Inconsistency was present in other areas of service access; a disparity between local service provision was recognised by families, which was a source of frustration:

I see other people who are benefitting in ways that I’m not and I’m struggling with that

The funding constraints of statutory services were viewed as a contributing factor to the unmet needs of families, with many acknowledging how service provisions were stretched thinly:

There’s a very good additional needs nurse but again I don’t really use her that much because obviously she’s limited to what she can offer.

The experiences of caregivers highlighted perceived risks of engaging with a service when unsure of the outcome, consistency and resulting impact this could have on their child’s well-being. Where services may not be available when needed or be able to provide the consistency and depth of knowledge that caregivers perceive as necessary, having low expectations may offer an understandable way of coping with uncertainty.

Individualised support needed but not often experienced (expectation vs reality)

The need for individualised support was central to caregivers’ experiences of both difficult and successful encounters with statutory services. Diagnostic overshadowing and false assumptions about diagnoses held by professionals were reported as barriers to good care. Assumptions were sometimes attributed to a lack of understanding, particularly within non-mental health services (e.g. physical health):

They [medical professionals] just see Down syndrome first, can’t understand why the child isn’t bubbly and friendly and then when you explain about the autism and then on top of that she has anxiety, but it just doesn’t seem to compute

Assumptions being made about a child’s behaviour often coincided with the provision of ‘one size fits all’ strategies based on diagnoses, rather than person-centred care informed by assessment. Caregivers felt in-depth assessments were essential for professionals to develop a greater knowledge and understanding of their child, however this was not often experienced:

OT [occupational therapy] give you a sheet, you know, exercises you can do, breathing exercises [. . .] so it’s kind of like, it’s almost like a pack . . . a one thing fits all, I don’t know. They don’t address anxiety or behaviours at all.

Medication prescribed for anxiety was sometimes reported as helpful; typically in the context of a wider package of support (e.g. alongside therapeutic interventions and thorough assessment of need):

it wasn’t the strategies on their own because we’ve got X the right medication we, I think as he got used to his sister, his behaviour got a bit better, anyway, there with the strategies as well, so I think it was one of a number of things that we put in place to kind of make X’s life better.

However, caregivers frequently reported the prescription of medication without clinicians taking the time to understand the individual’s personal circumstances. Caregivers were concerned that medication was at times the only offer, or was suggested before alternative support had been considered:

in the absence of not having any psychologist [. . .] because I think they cut a load of posts or something, he suggested drugs straight away.

Caregivers discussed that when medication was offered in these circumstances, it did not appear to be based on individualised care, but to avoid lengthy waits or other service limitations. Such decisions were met with a sense of frustration:

it took at least 6 months before we even got an appointment with the psychiatrist and at that point I was asked what sort of medication was I thinking she might need, and I was like no we want coping strategies [. . .] and then I think it was an ‘oh okay then I will see you in another month’, and this kind of went so on, and nothing really changed.

Expectations of caregiver responsibilities

Caregivers reported a high level of responsibility when supporting their child with anxiety and/or behaviour that challenges. Responsibilities included sourcing comprehensive information about their child’s often complex difficulties/diagnoses, and at times financing support for anxiety and/or behaviour that challenges. These experiences appeared to result from the constraints present within service delivery, and in some cases the absence of available statutory services:

They [services] give you a pamphlet and that’s, what is that is that you know, it’s something about the size of an envelope and you’re expected to just figure it out yourself.

we started a programme at home in the end in the absence of nothing else, and we borrowed money on our house in the years when you could borrow money on your house, and bankrupted ourselves basically trying to help him.

The lengths that families report going to when seeking support for their child are clearly not sustainable as a model of support delivery, with reported methods of obtaining funding not possible for many families.

In addition, services were felt to be challenging to navigate, requiring a high level of expertise. Caregivers felt professionals working in services also found this a challenge, adding to the sense of impossibility around accessing services successfully:

And there’s this assumption which drives me insane that you know exactly how it all works – they don’t know how it works, the people that are in the system don’t know how it works, how the hell you’re expected to know God I don’t know.

Caregivers may willingly carry out their responsibilities to improve their child’s quality of life, but they reported the expectation of knowledge and responsibility could not reasonably be applied to all families:

I am a parent that’s vocal, and I think it’s working in the care sector and supporting people, that’s made me like it, but when you talk to some parents that haven’t got that confidence, a lot of them will just sit there and take what somebody says to them and just accept it, and you have to learn to fight for things.

Expecting families to have certain levels of knowledge about services, material resources available to support their child, and the confidence to fight for support was therefore suggested to benefit families who were able to meet those expectations, thereby increasing already-present inequality, and subsequent inequity.

Fighting to be heard

Family advocacy was frequently referred to by caregivers attempting to obtain appropriate support for their child, which was often described as a ‘battle’ or a ‘fight’. This process risked taking precedence over the needs of the child they were advocating for:

it’s kind of like you’re lost in the battle of trying to get people to listen, but at the end of the day there is a child sitting there that needs help.

Such advocacy was particularly important for caregivers of autistic children with ID, who may find it challenging to articulate their distress verbally, creating additional barriers to accessing services:

We have an older child, she needed [mental health service] last year, and the only route seemed to be, go to a GP and go sit in a hospital and then get to see a mental health doctor, and that’s the child who is verbal [. . .] you think how am I gonna manage this with a child who can’t – and if they’re in pain, their reaction could be to laugh rather than just go ‘ouch’ you know, kind of different ways to manage all of that.

The value placed on the voices of caregivers appeared to be disproportionately lower than that placed on the voices of professionals. Caregivers highlighted this when discussing their experiences of seeking referrals to services for anxiety and/or behaviour that challenges; their requests were sometimes refused, or ignored until other professionals advocated on their behalf:

We met the X [research] team, and X who did communication, and X did the clinical assessments, so it wasn’t a diagnosis, but an assessment [. . .] so then we brought that report back and they said ‘oh I see’.

For some families, professional advocacy was essential, where the set-up of services did not allow for caregiver advocacy alone:

I’m trying to refer myself over and I’m getting just sent round in circles, one person ‘oh we didn’t receive that we didn’t receive that’, ‘oh it’s got to be with this person you can’t refer yourself you have to have a professional do it’.

This experience is concerning, given that professional advocacy was also suggested to increase barriers to support. Though professional advocacy can be valuable for obtaining support for families, the reliance on this can perpetuate devaluing of caregivers’ voices:

X’s paediatrician [. . .] didn’t believe that she was autistic [. . .] they kind of not blocked but made it very difficult to access services because of what they, their opinion that they put in writing, but when we were assessed by [mental health service], X scored really really highly so it was obvious to everyone else, but not the paediatrician.

Connection is key

Connectedness between systems and families was a common theme present where caregiver’s reported positive experiences of accessing services. Having a point-of-contact was reassuring to have, even if not used, and contacts included both professionals, and parent/carer networks:

but it was reassuring to have, you know, a mobile number and email address that we didn’t have to go right back to the start of the system and apply.

With families reporting experiences of not being heard, and of inconsistencies present when accessing and receiving services, it is possible that caregivers were not fully confident that positive experiences would be sustained. A point-of-contact within, or external to systems, therefore may have provided reassurance that families would not need to repeat their stories, and may experience greater consistency, in contrast to the below experience:

I find that the amount of repetition – explaining, explaining X and his behaviours and so on to various different agencies over and over and over again so that you feel like every time you go to agency A you explain it once, or agency B comes to you, you explain it again and there’s this ever continuing sense of get that far, get knocked back [. . .],there’s no central co-ordination.

Systems not being connected appeared to lead to caregivers not feeling heard, and lengthy, inefficient, processes. When multiple systems, such as education and NHS teams, communicated and worked together, support was delivered more efficiently:

it was a co-ordinated approach from all the departments and then would have the meetings at school where they bring everyone together you know the lady from [mental health service], the social worker [. . .] so everyone knew the input that everyone else was given to, you know getting X to a better place, it wasn’t disjointed.

Support should be collaborative

When caregivers were asked about anxiety interventions for their autistic child, their considerations often reflected what was missing in their own experiences when they had attempted to seek support. Although services were highlighted as assessing and offering support for current difficulties, caregivers emphasised the importance of families obtaining skills that are generalisable to future goals or difficulties:

I find that that you know there would be something that would be a particular issue and you might get some help to kind of you know work on it [. . .] then something else will happen you know a few months down the line so I think the last bit is really important, making sure that parents have got the tools to kind of work through the process themselves and come up with things they might try.

Future-planning was felt to be an important factor currently lacking in existing support that tended to focus on reducing specific behaviours. Obtaining a generalised understanding of the functions of behaviours that may re-occur in different circumstances, would in the long term enable the identification and prevention of distress, and associated behaviour that challenges.

Collaboration was discussed as important for ensuring professionals listened to the views of caregivers, who often have expert knowledge of their child and the needs of the family. However, caregivers were aware that this must not be an expectation for families who may need additional support to make sense of their child’s anxiety:

we’re assuming a little bit in this-our conversation that we know the source of the anxiety, what would be interesting in your study would be actually if it turns out to be something else. Because that might happen as well, because for a non-verbal child or young person, there’s a level of assumption on the part of the parent that they know the reason.

Families raised the importance of wider collaboration when taking part in interventions, through involving wider networks, such as other family members and systems (e.g. education). Caregivers suggested that by incorporating wider systems, the burden on singular family members could be reduced. It was suggested that taking a whole family approach would enable a more naturalistic (and straightforward) application of the intervention:

siblings of family can become part of the positive reinforcement of what they’re doing, or the, you know, showing that this is the best way to go forward, take a deep breath, or explain that they’re part of the story as well as the intervention too, and siblings are the best teachers you find, as well.

Interventions should be meaningful for families

Caregivers reported experiencing a ‘one-size-fits-all’ approach to interventions when accessing services. Meaningful interventions specifically for families of autistic children with severe-profound ID were considered essential, due to the complexity of identifying anxiety within this group:

he has anxiety when he cannot communicate how he feels or what he needs, that sometimes comes out in more frustrated behaviours, so we’ve got the sensory dysregulation as a result of anxiety, but sometimes the anxiety comes through dysregulation so it can work both ways, which is complex.

Caregivers referred to interventions that were not considered to be person-centred, leading to goals based on compliance rather than quality of life; however, caregivers also reported the need to find a balance between avoiding anxiety-provoking situations and being sensitive to the needs of autistic people:

there is a balance because there’s times where he doesn’t want to do something and we have to, and I don’t count that as a cruelty it’s just tough kiddo you know we’re going to have to just break through this barrier so there is a, there is a place for that.

Caregivers discussed the practicalities of achieving anxiety-related goals when anxiety can be complex to identify and reported that goals planned within interventions should be feasible, to reduce the likelihood of families feeling disheartened. Caregivers also highlighted how interventions should deliver content that is meaningful, and therefore engaging. Non-prescriptive content, where caregivers had choices and options, was referred to as desirable:

I think that kind of flexibility would be important that you know we were going through some area and me being able to say actually, I really don’t think this applies to you know my child but this other area we started discussing, yes, can we discuss that in lots more detail?

Caregivers discussed the lack of depth obtained from time-limited input and short-term interventions, particularly when behaviours are complex, and present differently to non-autistic individuals without ID. Longer interventions, that could be flexible and extended, if necessary, would offer the opportunity to embed skills more effectively:

I believe like as a parent I would be worried that if we’d gone like one or two steps backwards, if it’s limited to 16 weeks it’s really going to detriment everything else and we’re not going to get to the end of it before the 16 weeks is up.

The meaningfulness of interventions appeared to be associated with the development of skills that could accompany families throughout their child’s life. The well-being of families was suggested to be impacted when a sense of ‘failure’ is experienced during an intervention, and could be mitigated by providing sufficient time, and setting feasible goals.

Interventions are more than ‘sessions’

Despite specific intervention strategies being presented (in line with the methodology of the interview delivery), families focused on the wider context in which interventions were delivered, and the values held by services responsible for providing interventions. There was a sense that the context in which ‘session’-based interventions were offered needed to be therapeutic and accessible. Caregivers discussed the wide range of responsibilities and barriers present for families, such as caring for siblings of their autistic child and relying on public transport, and how services needed to respond compassionately and flexibly to families experiencing difficulties committing to interventions:

[child with ID]’s got a younger sister and an older brother who don’t have anxiety issues and aren’t autistic and it’s just you know doing things with them, and holidays, [. . .] I don’t think we’re the only family with that, to keep it continually week in week out might just sometimes for reasons you can’t foresee, just it doesn’t always work that way however high you try and prioritise something.

The caregiver-professional relationship was considered important for providing consistency. Having the opportunity to build relationships enabled open discussions, and the role of the clinician was highlighted as being responsible for helping caregivers make sense of their existing knowledge, as well as offering new insights:

As parents we’re sort of like the experts because, obviously, we know our children really well and so it’s kind of like having someone draw it out for you with the insights and things you have but just might not realise.

Having access to support outside of intervention ‘sessions’, such as resources, parent networks and direct contact with clinicians, was important for families, offering the opportunity for families to share important information in a timely way, access support ‘in the moment’ and apply interventions effectively:

on a phone call as well – things might not come into your head, but you could think oh, I’ll just pop that into an email and – you always think of something after the phone call.

Finally, the opportunity to obtain complex information from interventions was desirable for some caregivers:

it’s, that could be, that, that hat appeals to me, maybe because I’ve got an academic background – but I really like that, I like to learn about X’s condition I like to demystify it, so from my point of view that’s very appealing.

However, though desirable for some families, the ‘academic’ nature of interventions, alongside other commitments, was suggested to risk excluding families who may need greater levels of support to fully access and understand intervention content:

you are gonna have to be fairly switched on as a parent to engage in that kind of programme. Parents may also have other siblings, that means that that they cannot devote that kind of time to it, so I think I think it would, it would attract a certain type of parent.

Due to the time commitment and risk of excluding families with additional responsibilities, it was suggested that the use of digital platforms may provide a way for caregivers to engage in interventions more efficiently alongside everyday commitments:

whether there’s some sort of app-based way of recording things so that so that you have like a series of just four or five tick boxes but you can sort of go yeah that one, that one [. . .], the data that’s been collected would be more, possibly more, effective.

In highlighting the context in which interventions are delivered, caregivers demonstrated that though important, the therapeutic relationship should be more than rapport building and knowledge sharing. Being flexible to using alternative methods of ‘intervention’ delivery was suggested to aid the effectiveness of an intervention for both the family and the service provider.

In summary, families’ experiences of accessing services appeared to differ from their expectations, with many families reporting significant difficulty gaining access to a specialist service for anxiety and/or challenging behaviour. Caregivers raised several considerations that aided, or would aid, successful service access. Caregivers also expressed the impact of systems and networks outside of the family-service provider relationship, and how these contribute to the effective engagement and support for an autistic individual with ID and their family.