This study sought to explore participants’ experiences of going through the ARFID diagnostic process for their child with an IDD in the UK.
Table 3 illustrates the themes and subthemes which will be explored further in this section.
Table 3
Themes, Accompanying Subthemes and Main Codes Revealed from Thematic Analysis
Themes | Subthemes |
Theme 1: The ups and downs of diagnosis | The initial stage |
| Advantages of diagnosis |
| Difficulties of diagnosis |
Theme 2: Pushing for support | Reflections of good support |
| Where’s the support? |
| Damaged trust |
Theme 3: Looking into the future | ‘Spreading the word’ |
| Living well with ARFID? |
| ‘You are not alone’ |
Theme 1: The ups and downs of diagnosis
Participants displayed varied feelings about the ARFID diagnostic process. The diagnostic process's merits and faults were highlighted. Three major subthemes depict the discussion around first acquiring an ARFID diagnosis, why it was beneficial, and the reasons for certain complications.
Initial stage
Some participants reported hearing about ARFID after consulting a variety of healthcare professionals including “paediatricians” (Belle), “clinical psychologists” (Ivy) and “gastroenterology consultant[s]” (Nancy). One participant described learning about ARFID from a specialised trainer for schoolteachers working in a specialty setting:
Ruby: “It was somebody that comes in to do training at the school, training the teachers… because school were like really confused about what to do about Mia’s eating… so they mentioned it to him… he said, ‘Look up ARFID’ … and I’ve read it and I thought, ‘my God, this is Mia’.”
Clearly, families reported learning about or receiving information about ARFID from a variety of professionals. Participants also illustrated that those different professionals could work together to confirm the diagnosis:
Daisy: “They did a comprehensive assessment of his sensory needs… he was off the charts really with everything in terms of quite a high level of sensory need. And within a month or two we had a report from the multidisciplinary team saying ‘Yes… we feel confident that this is ARFID’.”
In contrast to participants who learned about ARFID from professionals, some reported learning about ARFID by accident:
Harriet: “We came across ARFID sort of accidentally. We watched a Channel 4 programme …and they mentioned ARFID, and it just ticks so many boxes with us.”
In terms of the assessment duration, participants had differing lengths for assessment time, from under an hour to half a day assessments. There were also noted differences in the ways in which ARFID was assessed, with some participants completing this via phone and others having professionals spend the day in their house. Although the diagnosis method differed in terms of assessment, there was a perception among participants that the ARFID diagnostic approach had advantages.
Advantages of diagnosis
Participants delved into the benefits of receiving an ARFID diagnosis in relation to the diagnostic process, such as the comfort they received after obtaining this diagnosis, the support the diagnosis allowed them to access and the fuel it gave them to learn more about ARFID.
Some participants regarded the procedure of acquiring an ARFID diagnosis to be "actually simple" (Ruby) in terms of assessment, though as noted previously, diagnostic processes might differ. Participants also described a sense of comfort after receiving the ARFID diagnosis since they now knew what their child was going through:
Harriet: “When we got it, I felt relieved because…it meant that we actually had something to say, ‘Look, he’s been diagnosed clinically by this’. …He needs the support and I think without this diagnosis, you don’t get more support. You don’t get the empathy. And you don’t get the understanding.”
Additionally, there was a feeling that obtaining an ARFID diagnosis could be powerful when trying to access support:
Daisy: “It gives you some protection and it enables you to advocate for your child better because they've got a diagnosed condition.”
Importantly, participants highlighted the importance of luck in the diagnostic process. For instance, in terms of waiting lists, Rose reported being “really lucky. It was only about three months at the time… it’s back to years”. Alternatively, Belle reported that her luck with obtaining the diagnosis was due to “other medical things” being present alongside ARFID traits. From a financial perspective, Harriet considered herself lucky “because they had some money from her previous job”, which led to being able to undertake a ‘private’ approach for diagnosis and support.
Moreover, participants signified that having the diagnosis led to the desire “to go and research more” (Harriet) to increase their early understanding of ARFID. There was also a sense that learning about ARFID themselves could support in educating other families about ARFID:
Florence: “It helps you understand as a parent that you can educate extended family members as well that may have them for the weekend or whatever.”
While there was some positivity from participants about the ARFID diagnostic process, not all families shared the same experience of the diagnosis as a strong instrument for support.
Difficulties of diagnosis
Some participants described various difficulties encountered within the diagnostic process. These primarily related to the difficulties associated with obtaining an ARFID diagnosis in the first place, including the intricacies of private versus public assessments and diagnoses, and specific IDD issues like diagnostic overshadowing.
Between participants, there have been two procedures undertaken to obtain an ARFID diagnosis: the public route and the private route. This means either going through the public sector organisation for a free diagnostic assessment or going privately and paying for the diagnostic assessment. Those who went private spent a lot of money and have asked help from “the main ARFID lady” or “the Queen of ARFID”, as Nancy describes her:
Ruby: “I went direct to [professional] privately as opposed to going through the system. I just literally emailed her privately and explained the history and said, ‘Can you help and how much would it cost or whatever?’. A grand. Paid it all privately myself so I didn't have to sort of jump through hoops of funding.”
Participants expressed differing reasons for taking a private approach to diagnosis. For example, a participant described the need to go private due to their locality and how there is no one to diagnose and support individuals with ARFID in their area. Further compounding the challenge to obtaining a diagnosis were the financial limitations described:
Harriet: “It’s not something that most people can do, and it’s not fair because people don’t have equal access.”
Additionally, even though private diagnoses were described as reducing the waiting time drastically, participants described waiting times still existing for private diagnoses. Importantly, participants described mixed experiences with accessing support after obtaining a private diagnosis:
Nancy: “[Professional] diagnosed and then we sent back to his [public sector organisation] clinic… So we only ever had to pay for the one consultation and then everything else after that was done was through the actual [public sector organisation] clinic.”
Harriet: “The diagnosis that we got because it was private, was invalid. And we had to get a diagnosis through the [public sector organisation] for it to be considered. So that was frustrating.”
One participant described the difficulties other families may face when seeking to obtain a formal diagnosis, since services providing an opinion about the presence of ARFID, but not a clinical diagnosis:
Harriet: “It was about asking the right questions for a diagnosis, whether or not it be accepted because a lot of people will offer a diagnosis which isn't a real diagnosis… There was a place in [location] that I contacted saying if you diagnose him, ‘Oh well, we can't actually clinically diagnose it, but we can say he’s got it’. And I was like, ‘Well, that's no good’. So I think a lot of people may have fallen into that trap.”
In terms of feeding behaviour, there was also an impression that professionals tended to demonstrate diagnostic overshadowing by emphasising co-occurring conditions as an explanation rather than the ARFID diagnosis:
Harriet: “A lot of professionals are also reluctant to diagnose ARFID with the autism… because a lot of them will just say, ‘Oh, it's down to the sensory issues around autism’… and I think that's down to misunderstanding as well… 'cause a lot of children are – probably do have ARFID, but they’re saying now ‘it's just autism’.”
Although the diagnostic process was clearly valuable for some participants, this appeared to be dependent on factors such as the locality and availability of services that can diagnose as well as provide the necessary support.
Theme 2: Pushing for support
Clearly, receiving support for ARFID is important for families, and some families in this study described some examples of good support they had received. Of importance, however, is the stark difference between participants, with many describing a lack of support for ARFID. Finally, participants described damaged trust in the support they receive for their child with ARFID. This theme therefore examined the support families received, and the extent families described needing to push for support.
Reflections of good support
Participants provided a well-balanced description of ARFID by also describing the various ways in which professionals have delivered good support for individuals with ARFID and their families. One parent described the clinical support they received from professionals after obtaining the diagnosis:
Nancy: “It did open up some channels for further treatment for sure…It's meant that we've been able to get into the feeding clinic, which we're hoping is gonna be able to start helping him and also it meant that we got a different dietician anyway because, with the tube feeding, we needed someone different. And so, she's working with us to try and build up his tolerance of food and things like that.”
Some participants described their experiences of parent feeding strategies (e.g., “You could see the iPad. OK, if you refuse to open your mouth, it goes away. Open it. It comes back”, Rose) as well as implemented therapy for their child with ARFID:
Harriet: “We started CBT therapy with them … it was all private… we spent all our savings on it. And it had a little bit of effect on him. We managed to get his weight up to 30.5kg and he grew. So, it did make an effect.”
Alternatively, some participants experienced good support demonstrated by their SEN schools in the form of support with supporting the children to eat different various foods:
Ruby: “She goes to a lovely special needs school… she's allowed to go up… to the dinner lady, “I wanted a little bit of this, little bit of that.” So that got her to start eating a few more different sorts of food… But it's only in that one setting, not anywhere else.”
Likewise, Rose had school support through having an educational healthcare plan to meet the needs of her child with ARFID. Interestingly, during mealtimes, participants discovered that being “distracted” (Belle) was useful for their child with ARFID, where attention diverted to something else other than the food:
Daisy: “Noah tends to eat when he's distracted. So if he's… watching something on the television or something like that, that's when he's most comfortable eating.”
Generally, participants described some support around food consumption, however this was contrasted with participants who also described that “there isn’t a huge amount” (Daisy) of support for ARFID.
Where’s the support?
This subtheme encompasses the missed or inadequate support families with ARFID that participants described experiencing. The scarcity of support was not only described within clinical settings but also in educational settings:
Harriet: “We had to go through the educational healthcare plans with school because there’s so much for school, but…they've not supported him at all with his eating and I think that's why he's plummeted…because they don't understand it. They just said, ‘Oh well, he’ll eat when he's hungry’ [laughs].”
One participant explicitly reported their negative view of support in their area:
Florence: “I’m absolutely appalled at our services in [location], even down to the dietitian. Now, when [public sector organisation] discharged Oliver and in a nutshell, they only discharged Oliver because they felt there wasn't anything else they could do.”
This was significant, as Florence described feeling that the public sector organisation only discharged her son when they did not feel they could do anything further for him, not when he had demonstrated a clinical improvement with his ARFID. Further to this, participants described support being offered to understanding overarching diagnoses, rather than ARFID itself:
Nancy: “Everything is put down to the global delay… they just say, “Oh well it's all down to that and his sensory difficulties”. I've always been just underpinned by it. And I think in general doctors tend to just try and brush it under the carpet.”
There was a sense that support was inadequate due to professionals having the “lack of willingness to acknowledge” (Rose) the complexity of what the ARFID diagnosis entailed or understanding of ARFID, and how they can support someone with ARFID. Unfortunately, even with ARFID diagnosed, one participant described receiving no support from the multidisciplinary team.
One participant clearly outlined the damage that professionals could cause by providing advice about supporting a child with ARFID, without being informed about ARFID:
Ruby: “A new social worker who… did not understand ARFID at all … [said that] Mia’s not gonna eat if you sit there and watch her eat. So, this went on for a few months and Mia’s weight had dropped… she’s gone down to three foods, and she had to go back on feeds. That's because you have one professional come in, doesn't know what they're talking about with ARFID. They'd do this, do that, and all the rest of it, and did so much damage just in six months.”
Participants described a sense of pressure in establishing support for their child, before and after obtaining the diagnosis of ARFID. For some families, this was described as leading to the breakdown of relationships between professionals and participants, as well as their families and friends.
Damaged trust
This subtheme explores the damaged relationship between participants and professionals as well as with their families, concerning the support they received before and after obtaining the ARFID diagnosis. Most participants indicated that it was a “traumatic” (Daisy) experience having issues with ARFID and comorbidities, and to have no help for it:
Ruby: “Mia’s case is very complex, because of the trauma of surgery, the trauma of being very sick as well as the sensory issues with autism, and because it's been allowed to go on for 17 years without any intervention.”
For others, ARFID was believed to have originated during traumatic experiences with food during times when they were receiving support with feeding:
Ivy: “He actually choked when he was… almost three years old, during a speech and language feeding programme. And there's your origin of ARFID… his real fear of gagging from that choking incident was just… it was irreparable really. It was very traumatic.”
Also, families described constantly putting pressure on professionals to ensure the provision of support required for their child:
Nancy: “Yeah, we basically had to fight for everything we’ve got and you kind of wait months and months for it to come.”
This pressure for support appeared to be something participants had experienced previously but also currently:
Belle: “We’re now still fighting for support.”
Furthermore, there were some disagreements within families. Rose described not being listened to by some professionals, her own family and her spouse. She believed that she was the only one to see her child’s eating habits, and as a result was called “a crazy woman”, negatively affecting her mental health. She described that the clinical psychologist supporting the family with ARFID stepped in and helped her to maintain strong-will for her child:
Rose: “It wasn’t necessarily just working with him, she was working with me… empowering the family and how to move forward with ARFID basically.”
Although there was some help in trying new foods and increasing the food safety net of the child with ARFID, this occasionally backfired and instead led to food avoidance:
Nancy: “The advice you get from dietitians is totally awful really [laughs] and it doesn’t match the way these kids work. ‘Oh, don't give him what he wants… he’ll eat it if he's hungry’. But with the ARFID… you need to have the safe food there… and not to give them anything that they're gonna really hate’. Because… he’s gonna refuse everything.”
And so, participants felt that experimenting with safe foods was not the answer it will create “an even bigger problem” (Florence). This leads to the notion that there is distrust with others supporting the person with ARFID as they may have the wrong approach or advice. This was supported by most participants, where most of the knowledge around support comes from the actual families with ARFID:
Nancy: “You trust these people to give you the right advice? They’re the ones that are trained. But actually, they're not always the ones that have the greatest knowledge. You end up being the one that tells them what is.”
Theme 3: Looking into the future
While the support was generally described as inadequate, the negative experiences of support became learning curves for participants. The awareness of their experiences of support provides some knowledge and understanding of what to expect when obtaining an ARFID diagnosis for future families who will have to deal with ARFID, which is discussed in this section. This involves the ideas parents have and want to see in the future for ARFID, including recommendations for the community, professionals, and personal advice for families.
Participants expressed a hope that there would be an increase in the awareness of ARFID. It was believed that this would lead to some understanding within their community in which people would be able to recognise the issue for what it was, rather than attribute it to another co-occurring diagnosis:
Ruby: “People can actually pick up it is ARFID. It's not just the autism and start dealing with it as a separate issue. Because it is a separate issue and it needed dealing with correctly from day one.”
Others have also stated that training beforehand would be desirable for professionals in health and school settings:
Daisy: “Not even health professionals always really understand.”
Daisy: “The school day can be absolute hell because… children with ARFID will be dreading that lunch break. Whether it's being criticized… what’s in their lunch box, or having to somehow navigate what's on offer in the school lunch, tolerating all the smells and sounds… I think that there needs to be much better training in schools.”
There was a hope that training would also help more families obtain an official ARFID diagnosis, and in turn, will increase the awareness of ARFID:
Rose: “It’s obviously underdiagnosed and under supported… the more people are diagnosed with it, the stronger voice we have”. (Rose)
Though, for ARFID, awareness is still difficult due to the norm around feeding and healthy eating:
Ivy: “I think there’s still that sort of stigma isn’t there? ‘Oh, it’s a naughty child who just won't eat her vegetables or just won't eat this’. It’s much more serious than that and I think we’re in danger of that. Perhaps dominating and really devaluing the act of seriousness of ARFID.”
It seemed that the more understanding and awareness of the families with ARFID, the possibility of better support that families can provide for their child with ARFID.
Living well with ARFID?
Participants gave mixed views on how they have tried to live well with the diagnosis. When looking at the negative impacts, participants felt “parental blame” (Ruby) from professionals and extended families over the feeding patterns of their children, with some parents described defending themselves against criticism:
Rose: “I look at her and I said to her, ‘Don't you think I’ve tried to feed my child all this time? Do you think I'm purposely not feeding him?’.” (Rose)
Additionally, participants illustrated the hardship of going out for meals at a restaurant, or even travelling due to ARFID. This resulted in participants describing leading very constrained lifestyles, where some participants have had to quit their jobs in order to support their child with ARFID:
Rose: “I never went back to work. My job was to keep him alive every day to get enough calories into him so that he was getting sufficient calories.”
To combat these experiences, participants appear to have created ways to get around the negativity from professionals and extended families. Ruby described that the diagnosis provided the validation she needed to counteract that criticism:
Ruby: “[It] validates that, no, it's not your fault. This is a genuine thing.”
Others conveyed that in order to support their child and live well with ARFID, they must focus on believing that there is hope in the future, even if the path is difficult. Moreover, participants have reported that having some sympathy and empathy towards their child with ARFID is necessary to live well with the diagnosis:
Florence: “I think the worst thing any parent could do is pressurise and try to get him to eat something. I wouldn't like it… if someone puts something in front of me that I didn't like. How would I cope with that? You know, I’d wanna push it away and be adamant. No, I'm not trying it. I don't like it.”
In contrast, there were some participants that showed their acceptance and optimism about their child living well with their diagnosis as they get older:
Florence: “I do remain positive and hopeful that maybe he will change… I’m very relaxed about it. I don’t get myself stressed. I don’t want to upset him. I have to take on board that he’s very sensitive as well.”
And most importantly, when the changes do happen, “you should celebrate the wins” (Daisy). Moreover, Rose reports that “in the long run, it’ll be beneficial for your child to understand ARFID”. But what is important to note is that families do not have to go through with supporting their child with ARFID alone. There is available non-professional support out there, which the next section will explore.
Participants in this study wanted to impart the notion that families are not alone in supporting people with ARFID and that there is support for them out there. Participants’ advice to future ARFID families centred around reassurance that they are “not getting it wrong” (Daisy) and reassurance around the diagnosis itself:
Florence: “It can be quite daunting and you can feel quite alone with it, especially in that acceptance period because ….for some people, it's really hard to accept that your child's got this.”
Participants highlighted obtaining a diagnosis as the top priority for access to support, as it was understood that the diagnosis was the mechanism through which “people will listen to you more” (Harriet):
Nancy: ”If they don’t have a diagnosis, you find it really hard to get anywhere with support. That for us is the most important that we can access the stuff he needs through different means… if that means that he needs a diagnosis to go along with it, then so be it. We need something to give us that understanding for other people, not just for us.”
One participant expressed optimism that the diagnostic process may have improved from when this was a new diagnosis:
Florence: “It was a new diagnosis out there. The professionals were still trying to get their head around it. So, someone getting a diagnosis now might be in a better position than I was because maybe their professionals are a little bit more on board with it and… there's probably a lot more research on it now.”
Many participants expressed a belief that from trying to obtain the ARFID diagnosis and access to support, you will need to “get your battle gear on, prepare for a fight” (Ivy). And for this, participants have suggested that families with ARFID should join online support groups:
Nancy: “I would definitely say you need to join these groups because they’re pretty much the best place to get any kind of support or advice from.”
Participants indicated that it may be scary joining support groups, but it provides the reassurance that families need, and crucially, as other families understand the situation, there is “that sense of there is a community out there that understands what you're going through” (Nancy).