• Parents of autistic YP with anorexia nervosa raised concerns about the suitability of some FT-ED principles (externalisation, agnostic stance), and their experience that treatment can be facilitated in a very manualised and impersonal way.

• A lack of guidance and support in making adaptations to FT-ED for their autistic child, led to a requirement for parent-led advocacy to make autism affirming adaptations.

• Parents identified a number of adaptations that could be made to the delivery of FT-ED including the increased use of the separated approach, incorporating more techniques to manage distress and bespoke training for ED clinicians.

1 Introduction

Autistic people and people with higher autistic traits are at increased risk of poorer treatment outcomes for their eating disorder (ED) compared to non-autistic people, including higher use of inpatient settings and longer admissions (Nimbley et al. 2025). There is a pressing need to improve treatment outcomes for this population, particularly knowing that autistic people, and people with higher autistic traits, are overrepresented in individuals seeking treatment (Boltri and Sapuppo 2021; Westwood and Tchanturia 2017), including in child and adolescent populations (Inoue et al. 2021; Westwood et al. 2018). Autistic people, carers, parents and clinicians have stressed the importance of adapting treatment to meet the needs of autistic people experiencing EDs (Loomes et al. 2025).

Understanding how and when to adapt ED treatment for children and adolescents is important given the benefits of timely intervention (Austin et al. 2022; Mills et al. 2024). The recommended ED treatment for children and adolescents is ED focused family therapy (FT-ED), which is significantly superior to individual therapy on weight outcomes at end of treatment (Austin et al. 2025). The two most commonly used FT-ED models are family based treatment (FBT) (Lock and Le Grange 2025) and family therapy for anorexia nervosa (FT-AN) (Eisler et al. 2016). In both models, the early phase of treatment emphasises the importance of parents supporting their child to eat despite the strong ED cognitions and heightened emotional distress that makes it hard for the young person (YP) to do so. This is a short-term phase until the effects of starvation are reversed and/or disordered eating behaviours reduce. The subsequent phases of FT-ED shift the focus to the child being supported to take back age-appropriate responsibility for eating and to address other individual and family maintenance factors that act as barriers to independent eating. Both FBT and FT-AN share underpinning principles (Baudinet et al. 2021a; Rienecke and Le Grange 2022) including an agnostic stance around the cause of the illness, the use of externalisation and a pragmatic approach to symptom reduction.

Little is known empirically about the effectiveness of FT-ED for autistic children and their families. A case series (Bentz et al. 2022) compared outcomes between groups of autistic and non-autistic adolescents being treated with FBT for a restrictive ED. They reported that whilst for some autistic adolescents FBT led to good outcomes, half of the autistic adolescents required more intensive inpatient or day patient treatment. Similarly for FT-AN, Stewart et al. (2017) presented outcome data from a specialist child and adolescent ED service delivering FT-AN, reporting no significant difference in physical outcomes and length of treatment across levels of autistic traits, although those with high autistic traits had significantly greater use of day patient and inpatient treatment. Finally, Bentz et al. (2025) large naturalistic study of over 600 adolescents receiving FBT found that autistic adolescents were more likely to require inpatient or day patient treatment, with a probability of 34% compared to 15% for their non-autistic peers.

Qualitative research can enhance our understanding of poorer outcomes of FT-ED for this population. A recent study exploring clinicians' experience of delivering FT-ED with autistic young people and their families (Duffy et al. 2025) highlighted increased risk of misattunement within therapeutic interactions between parent(s), YP and clinician. It was proposed that this may be explained by the double empathy problem (Milton 2012), a breakdown in reciprocity and mutual understanding between people with different ways of experiencing the world (e.g., different neurotypes). Furthermore, clinicians suggested that some FT-ED manualised techniques, for example language of externalisation and the use of circular questions, may not align with autistic cognitive and communication styles. However, given that parents hold an integral role in the early phase of FT-ED, their experience is also key to guiding how the model should be adapted for autistic adolescents and their families. Kinnaird et al. (2021) interviewed parents of autistic adolescents and adults who had been treated for an ED via a range of modalities. Of the few parents in the study who received FT-ED, two described it as unhelpful for their child, pointing to difficulties with capacity for abstract thought and demand avoidance. A recent meta-synthesis of the qualitative literature on the autistic experience of restrictive EDs (Loomes et al. 2025) found no qualitative studies that pay attention specifically to parent or child experiences of FT-ED.

The current study aimed to address this gap by interviewing parents about their experience of FT-ED in the context of having an autistic child. Our specific research questions were: how do parents or carers of an autistic child with an ED experience FT-ED? And what were/are parent or carer experiences of any adaptations made to FT-ED for their autistic child with an ED?

2 Methods

The study received approval from the University of Edinburgh (CAHSS2401/04) and participants gave written informed consent.

2.1 Participants

Participants met inclusion criteria if they were a parent or a carer of a YP who had been formally assessed to be autistic and had received FT-ED for anorexia nervosa (AN) or bulimia nervosa (BN) within the last 3 years. There was no specification about the timing of the autism diagnosis (prior to, during or after FT-ED). Participants were required to speak English. No participants with experience of FT-ED for BN were recruited therefore this study represents experience of FT-ED for AN only.

2.2 Procedures

Participants were recruited through social media, word-of-mouth, and relevant parent support networks. Interested participants contacted the principal investigator via email or completed an online survey included in study adverts. Online interviews were organised via email and a consent form and brief demographics survey were completed via online survey. The interviews, facilitated by FD, IP and EN, took place on Microsoft Teams. The interviews were guided by a series of questions (see Supporting Information S1) considering participants' experience of receiving FT-ED and any adaptations to the model. The interviews lasted between 54 and 107 min (M = 75 min). Participants were offered a debrief and were signposted to support resources at the end of the interview.

2.3 Participant Characteristics

The final sample (n = 12) consisted of 11 mothers and 1 father (age M = 49.6, SD = 5.38, range = 42–59). All were White British. Six of the parents had terminated FT-ED early (50%), three were still receiving FT-ED (25%) and three reported they had finished FT-ED (25%). All autistic young people were White British, identified as female and had received a diagnosis of AN (all n = 12). Of their autistic YP (mean age = 14.5, SD = 1.73, range 12–16), one (8.3%) had received an autism diagnosis prior to FT-ED, six (50%) received a diagnosis during FT-ED, and five (41.7%) received a diagnosis following FT-ED. For reasons of confidentiality, demographic information has not been linked to individual participant narratives.

2.4 Analysis

Transcripts were analysed by EN and FD using reflexive thematic analysis as described by Braun and Clarke (2021a, 2021b). We took an inductive critical realist approach, being led by the data whilst holding in mind individual perspectives of reality (Willig 2022). Researchers adopted an information power approach, whereby members of the research team mutually agreed that no new codes were emerging that addressed research questions. This was chosen, as opposed to data saturation or alternative approaches, in line with guidance on the constant potential for novel interpretations inherent in reflexive thematic analysis (Braun and Clarke, 2021a, 2021b; Malterud et al. 2016). Themes and subthemes were reviewed with the larger research group consisting of FBT and FT-AN trained clinicians. Themes and supporting quotes are narratively synthesised. The study only recruited parent participants therefore any inferred statements from clinicians, young people or other individuals, are parental recollections rather than direct quotes.

2.5 Reflexive Statement

The research team incorporates clinical, academic and lived experience relevant to autism and eating disorders. This study is influenced by the neuro-affirmative stance of the authors, embedded in a mixed-neurotype research team that posits meaningful engagement with the experiences of autistic people and their families as integral in advancing research and clinical practice.

3 Results

The reflexive thematic analysis resulted in four themes (see Table 1).

3.1 Questioning the Principles of FT-ED

The first overarching theme reflects how some of the principles underpinning FT-ED may not be fully aligned with the needs of the autistic YP or their parent. Two sub-themes were identified: (1) Challenging the agnostic stance, which focuses on how parents felt that an agnostic approach was not suited to autistic experiences of EDs; and (2) Balancing young person and parental needs, which highlights how some of the principles of FT-ED may meet the needs of parents more than their YP.

3.1.1 Challenging the Agnostic Stance

Many parents questioned the agnostic stance of FT-ED, specifically the initial focus on weight restoration without exploring the cause of the ED or addressing underlying emotional difficulties early on in treatment:

I understand the theory that by eating more would mean that the thoughts would come down and that … the impact of starvation would reduce, in terms of she’d have more cognitive flexibility potentially and be more able to tolerate her distress, but just didn’t really see that. It just felt like we were stuck with masses of distress.

Several parents felt that being autistic contributed to the development of their YP's ED, and that by adopting an agnostic stance to treatment, FT-ED failed to truly understand, and therefore treat, their YP's ED. Most of the participants' children had not received an autism diagnosis prior to FT-ED, with one parent stating that, in their opinion, the driver of their child's ED was ‘as simple as living with neurodiversity and not having it recognised’ (PC10). Importantly here, it was not only that their YP's autism was unrecognised prior to engaging in FT-ED but that it continued to be unrecognised and unaddressed during FT-ED:

That wasn’t addressed at all during FBT, and it would have been helpful because it was caused by autism and you that’s my, I do fully believe, that if she didn’t have autism then she wouldn’t have the eating disorder.

3.1.2 Balancing Young Person and Parental Needs

Parents also discussed how some of the techniques or principles of the FT-ED model did not simultaneously meet the needs of both them and their YP. A notable example of this was externalisation. While one parent did note that externalisation worked well for both, the remaining parents felt that externalisation was beneficial for the parent and the family, but not for the autistic YP themselves:

I’m sitting there going, absolutely all of this externalisation, definitely the way forward. So, we thought this is really helpful as parents. She just could not get her head around this. She talked about [externalised name for ED], but she just said, ‘but my thoughts are my thoughts?’

For many parents, attributing the ED to an external entity allowed them to separate it from their YP and gave them a clearer sense of how to support their child. Autistic YP, however, were felt to struggle with this separation, expressing notable difficulty with disentangling the ED thoughts from their own. Some parents discussed how their YP found it insulting or offensive, while others said their YP felt that their experience was being dismissed and invalidated. Importantly, some parents felt that there were certain autistic cognitive and communication styles, such as differences in imagination or visualisation, that meant externalisation may not be suitable for autistic YP with an ED:

It just doesn’t work for her. She’s never given it a name or separated it from herself. Cannot do that. I think she has real problem with visualising things and all the rest of it. It’s just not for her.

Parents often felt like they would have benefited more from FT-ED if they had received certain parts of the treatment separately, suggesting that there is a need for clinicians to more actively consider a separated FT-ED model with this population, to support balancing between differing treatment needs. An example of this was navigating the sessions with both parent and autistic YP in the room:

[YP] always being there, and that was so unhelpful because I felt like it was coming at the cost of mine and her relationship, because it was like I was always criticising her.

An important consideration here was that this was felt to not only be of benefit to themselves but also to their autistic YP, in whom sensitivity to rejection or criticism was common:

What YP hated was the reproach and disappointment and grave concern in the room when the weight was the same or down … I will say on her behalf, it was real, she was not just irritated and a bit piqued. It cut to her very soul.

Thus, parents often felt that traditional FT-ED assumptions do not account for autistic cognitive and communication styles, such as differences in imagination, visualising and rejection sensitivity, and a joint FT-ED model may struggle to accommodate different treatment needs between parents and autistic YP at a critical point in the recovery process.

3.2 Navigating the FT-ED Process

The second overarching theme focuses on how FT-ED was delivered or facilitated. Two sub-themes were identified; (1) Protocol over patient, where parents felt that FT-ED was manualised and inflexible; and (2) ‘Bumpy’ FT-ED, which focuses on how parents felt that their experiences did not align with traditional stages.

3.2.1 Protocol Over Patient

Many parents discussed how FT-ED could be facilitated in a very manualised and impersonal way. This was felt to be hugely unhelpful, ultimately failing to recognise and respond to the needs of their autistic YP, themselves and their family:

I understand everything about the why of FBT, but it’s theoretical. It’s like from a textbook and not adapted. It needs to be adapted for different people and to find out what works for that person and family.

Many parents acknowledged a need for evidence-based treatment, but criticised the lack of personalisation of this care, particularly the failure to adapt the approach to meet the unique needs of their autistic YP. Parents were left frustrated, as FT-ED was often felt to be continued long after it became clear that it was not working, or indeed, perhaps was perpetuating harm to their YP:

They gave the FBT approach, it didn’t work. So they give more FBT approach and that didn’t work. So they gave an even stronger FBT approach. Then she was sectioned … they tried; I can’t say they didn’t try but they were so convinced that the FBT [would] work for my child that they never deviated from it.

3.2.2 ‘Bumpy’ FT-ED

Many parents reported that their experience did not align with the typical progression through stages of the FT-ED model and was often very ‘bumpy’. For example, some parents felt that traditional timeframes associated with FT-ED were unrealistic:

It’s just takes a really long time … they’re surprized how long it’s taking, and I think that’s the autism side of it

Transitioning between stages was often felt to be a particular challenge, such as transitioning from parent-led feeding in the early stages to handing responsibility of eating back to the YP. Parents reflected that more flexibility in expectations would have been beneficial during these stages, perceiving that within ‘the context of autism it's just recognising that might take more time because those young people might just need a little bit more support with that.’ (PC2). This bumpiness sometimes led to parents getting ‘stuck’ in initial refeeding stages of FT-ED, with one parent highlighting the extent of support that is required when changing focus of treatment:

Another thing that I’ve found with FBT, you put a lot of supports in place, and each and every accommodation or support you put in place is something you have to then remove later on, and I wonder if an autistic person becomes more reliant on those and a non-autistic person, they might just fall away naturally.

Some parents reflected on how distressing it was for autistic YP to be expected to hand over all responsibility of eating to parents in the early phases of FT-ED, with many parents supporting their YP to retain some elements of responsibility against the advice of the treatment team:

Although it’s been unconventional, giving YP utter control means she’s been practicing all the phase two stuff at the same time as refeeding herself

3.3 Parental (dis)empowerment

The third theme of parental (dis)empowerment, appeared to emerge from the accumulative process of navigating FT-ED with their autistic child. Specifically, parents discussed how a perceived lack of support and guidance left them feeling disempowered, in direct contrast with the underpinning principle of FT-ED of actively supporting parental self-efficacy, negatively impacting themselves and their family relationships. This was discussed across three sub-themes; (1) Parent-led advocacy and adaptations, which focuses on how these negative experiences of FT-ED led to parents having to advocate and adapt for their autistic YP and for themselves; (2) Blame and shame, where parents discussed the implicit and explicit shame they experienced during FT-ED; and (3) Systemic considerations, focusing on the perceived impact of FT-ED on the family, with the additional consideration of neurodivergence in families.

3.3.1 Parent-Led Advocacy and Adaptations

One of the leading ways in which parents felt unsupported and disempowered was through a lack of guidance and support in making adaptations to FT-ED for their autistic child,

All the information came from outside sources, I had to get it for myself. I wanted every single piece of information I could my hands on to know exactly how I could help her in conjunction with the autism

This led to a requirement for parent-led advocacy to make autism-affirming adaptations, particularly during the weight restoration phase:

Everything that we adapted more or less, maybe a few tiny adaptations, I innovated out of the depths of reading, and I had to ask for them, or I had to just step out solo without the support of other people.

This had a negative impact on the wellbeing of the parent, as well as on the relationship between parents, their child and clinicians. Parents reported feeling isolated and unsupported, undermining the key principle of parental empowerment:

I don’t think we felt empowered, I think we felt left alone really, or not alone, cause we did see them, but we felt unsupported.

3.3.2 Blame and Shame

Another means through which parental empowerment was undermined was the reinforcement of blame and shame placed on parents navigating FT-ED for their autistic YP. Parents often felt like they were to blame for both the development of their YP's ED and for a lack of treatment progression during the refeeding process:

Your first job as a mother is to feed your child, you know, that’s what you do. And you feel like you’re a failure if you haven’t done that.

This pervasive sense of blame and shame was internalised by parents, giving rise to a sense of failure, undermining their perceived ability to support their child. This was further compounded by experiences of parents who had tried to make their own adaptations for their autistic YP:

When we were making the accommodations, we were told ‘you’re colluding with the eating disorder’ and they tell you ‘you’re colluding with the eating disorder every time you do that, you’re maintaining the eating disorder’ and the guilt that was put on us.

Despite parents feeling they were attuned to the needs of their autistic YP, they were made to feel guilty for deviating from expectations of the FT-ED clinicians, invalidating their instincts on how to support their child and it being inferred they were causing harm. Such tensions often resulted in a breakdown in the relationship between parents and clinicians, creating a sense of disunity, disempowerment and, for some, ‘warfare’:

You feel like you’re in the trenches, you put your head above the trenches and they’re shooting at you.

3.3.3 Systemic Considerations

Parents also discussed a lack of consideration regarding the impact of FT-ED on themselves and their families:

It had an immense impact on my husband’s and I’s mental health, and in the end, I ended up going off sick because it tore the family apart.

While parents acknowledged the importance of treatment focusing on their autistic YP, there was a keen sense that there was no support offered for their own wellbeing or that of their broader family, indirectly impacting parental self-efficacy, a key principle underpinning FT-ED. This was experienced in a range of different ways, including conflict within the family and breakdown in relationships with the autistic YP, with one parent saying she felt she had ‘lost her daughter to FBT’ (PC1).

Several parents also reflected on how their YP being identified as autistic led them to query autism or neurodivergence within their families and within themselves, raising an additional systemic consideration for FT-ED for autistic YP and their families:

We had no inclination of suspicions that YP was autistic and we’ve now since discovered her young sibling is autistic and having done a few sort of online things, I have a lot of traits as well.

3.4 Adapting FT-ED

Although suggested adaptations to FT-ED were discussed across themes, this final theme focuses more globally on the process of adapting FT-ED for autistic YP. Discussions fell under two sub-themes: (1) Barriers to adapting FT-ED at a clinician and a service level; and (2) Suggested adaptations to FT-ED to be more aligned with autistic YP and their families.

3.4.1 Barriers to Adapting FT-ED

Parents discussed a number of barriers that they came up against when trying to advocate for adaptations to FT-ED for their autistic YP. Firstly, they felt that there was limited clinician understanding of autistic experience in ED services. Several parents discussed how autistic sensory and executive-functioning profiles, such as sensitivities to sounds or tastes, differences in executive functioning, preferences for sameness and demand avoidance, were poorly understood and were not adapted for during FT-ED. There were also discussions on how FT-ED made assumptions about ‘normal’ eating or recovery expectations that did not align with their autistic YP. In some cases, such traits were picked up early on but there was no attempt to accommodate for them, while for others, ED services disputed that there was even a relationship between autism and EDs:

They were basically just, you know, your child has an eating disorder, she’s diagnosed with anorexia, that’s the only thing we are thinking about. ‘Even if she is autistic, that hasn’t got anything to do with this.

Many parents felt that this stemmed from a disconnect between autism and ED services, with individual services operating within discrete clinical pathways:

‘That’s not our pathway’, was all they kept saying. ‘We don’t do that.’

Parents were confused as to why this was the case, and many felt that they would have benefited from an autism perspective throughout FT-ED:

It baffles me now, I don’t understand why, when you look at anorexia there must be so many children who have anorexia who also have autism. Or any eating disorder, not just anorexia, any eating disorder … they go hand in hand. So why are services so separate?

Another perceived barrier to adapting treatment for their autistic YP was resistance to deviating from the FT-ED model. Parents felt that clinicians were reluctant to accept that there may need to be adaptations to how FT-ED was facilitated or how long it was facilitated for, and that there was no flexibility allowed during the process:

It’s almost like the eating disorder service had this, this is what we do and we’re not going to deviate from it unless we’re forced to, almost.

For some, even an autism diagnosis did not lead to treatment being adapted, and parents highlighted for knowledge of adaptations to be shared:

There’s no manual for autistic children doing FBT … it’s really important that this happens, but until that’s codified, there isn’t the knowledge to be able to support people

3.4.2 Suggested Adaptations

In the final sub-theme of adapting FT-ED for autistic YP, parents reflected on how many of these were not made during their treatment experience, but they believe would have made a notable difference to their autistic YP and family. One of the leading suggestions was having more autism-informed support:

Definitely more support with the autism, and from the very beginning having somebody who understands autism, who’s got experience of working with autistic children with eating disorders.

An important consideration in improving autism-informed support was improving clinician and service level understandings of autism and how it may interact with elements of FT-ED. For example, parents suggested adapting food expectations to account for sensory differences and, where possible, allowing for longer sessions with more consistent staff to improve connections with their child. Parents felt that clinicians should ‘take the best bits about being autistic’ (PC4), seeking to harness autistic strengths, such as preference for routine and predictability and incorporate these into treatment adaptations. An important element of this was the need for person-centred adaptations, with clinicians encouraged to learn from both lived experience of the autistic YP and their parent:

I don’t think it’s a case of throwing the baby out with the bathwater, but it would have been more helpful if we could have discussed adaptations and reviewed them. Now that’s working for her, let’s do more of it. That isn’t working for you as a family, let’s check out another idea.

Another common suggestion for adaptations to FT-ED was screening for autism during ED assessment to allow for rapid adaptations to treatment:

I think everybody who presents to eating disorder services should be screened for autism. Absolutely, first of all.

However, some parents did not necessarily agree that screening and assessment would be helpful, suggesting that it could have been overwhelming for parents:

It was enough for us to process she was anorexic … that would have been quite a lot to take on at the point of diagnosis.

It could be that raising autism at assessment, a period of heightened distress, may be harder to process than later in treatment. Heterogeneity here across parents suggests that, although there is agreement over the need to understand and adapt for autism during FT-ED, considering how this can be done in collaboration with families is essential.

4 Discussion

The current study is the first to explore parent experiences of FT-ED for autistic young people with AN. This builds on previous research exploring clinicians' experience of delivering FT-ED with autistic young people and their families (Duffy et al. 2025) where parallel reflections were made around concerns about some of the underpinning principles of FT-ED, specifically the agnostic stance and externalisation. For parents, externalisation was found to be helpful for them but not for their autistic YP, who were commonly reported to find it challenging and invalidating. Some parents highlighted that this technique may be at odds with some autistic characteristics, including managing abstract concepts. However, this sense of invalidation and initial rejection of externalisation has previously been reported generally across different ED treatments (Cripps et al. 2024) therefore may not be unique to FT-ED, or with autistic populations. Indeed, Cripps et al. (2024) highlighted that the problem may lie in the delivery of externalisation as promoted in some manualised therapies, where it can be reduced to a strategy to support behavioural change by inferring a powerful external force, rather than delivered ‘in the spirit of narrative therapy from which it originates’. More recent developments in FT-AN have focused on incorporating a broader concept of externalisation that includes neurobiology and the effects of starvation (Gorrell et al. 2023) that would be useful to explore within this population.

Parents raised concerns around the underpinning principle of an agnostic stance and that it may have contributed to a lack of consideration in the role that autism, particularly unrecognised autism in females, may have played in the development and maintenance of their child's ED. Most YP in this study had not received an autism diagnosis until during or after FT-ED, however many parents also felt that even early detection of autism or autistic traits in their YP by clinicians did not lead to meaningful adaptations to treatment. Interestingly, clinicians have also questioned the agnostic stance that underpins FT-ED when working with autistic young people, raising concerns that this may mean the impact that autistic traits have on ED symptoms could be overlooked (Duffy et al. 2025). FT-AN places greater emphasis on collaborative formulation than FBT (Baudinet et al. 2021b) and the impact this has on appropriate adaptations to treatment, families feeling heard and understood, and any associated differences to clinical outcomes for autistic young people would be interesting to explore.

Parents described concerns around inflexible delivery of FT-ED and how distressing and potentially harmful this was for their autistic YP and their family. This is despite both FBT-AN and FT-AN increasingly supporting fluidity in their therapeutic approach (Gorrell et al. 2023). There may be multiple factors contributing to this sense of inflexibility including what FT-ED clinicians have previously described as the potential for bidirectional misattunement between clinician, autistic YP and parents, aligned with the double empathy problem (Milton 2012), resulting in clinicians falling into an authoritarian therapeutic style (Duffy et al. 2025). It may also reflect a lack of confidence of ED clinicians in treating autistic individuals with EDs (Kinnaird et al. 2017), exacerbated by what parents describe as a silo of autism and eating disorder services. In the absence of clinician-led adaptations to FT-ED, parents reported taking a more active role in making adaptations for their autistic child. While this could be interpreted as a positive example of increased parental self-efficacy, it was reported that these adaptations were not always welcome by the FT-ED clinicians, as they were viewed as deviating from the manualised model.

It is important to note that many of the experiences described in this study are aligned with general parental experiences of FT-ED, for example that the treatment can be delivered in an inflexible way (Williams et al. 2020) and the emotional toll of this treatment approach (Thibault et al. 2023). The criticism of an initial drive of weight restoration in the absence of focusing on emotional distress, has previously been highlighted in general lived experience accounts of FT-ED (e.g., Conti et al. 2021). However, parents of autistic young people have also reported feeling let down by ED services, partially due to a lack of adaptations to their ED care (Adamson et al. 2020; Loomes et al. 2025), suggesting there may be a broader sense of frustration and disempowerment in parents of autistic individuals with an ED.

Current findings stress the need for treatment adaptations for autistic young people with EDs. However, parents in the study felt cautious about ‘throwing the baby out with bathwater’ and made suggestions for adaptations to FT-ED, while acknowledging aspects of the model are effective and evidence based. Interestingly some of the suggested adaptations, such as having separate parent-child sessions or increased focus on distress, already exist (Eisler et al. 2007; Gorrell et al. 2023; Le Grange et al. 2016) but notably were not incorporated into the treatment experienced by parents in this study. This may infer difficulties with dissemination of these strategies, or reflect a tension FT-ED clinicians have previously described as to whether to adhere to a manualised approach or to make adaptations to treatment, underpinned by a fear of causing harm (Duffy et al. 2025). Parents suggested increased understanding and training around autism, and how it may interact with EDs, would likely improve treatment experiences, echoing calls from clinicians for more access to autism-specific training and supervision (Li et al. 2024; Novogrudsky et al. 2025). Parents also suggested increased communication between ED and autism services, due to concerns that current service pathways in the UK often operate in silos. This has similarly been reported by autistic individuals with an ED as a barrier to accessing and engaging with broader ED treatment (Babb et al. 2021).

The current study is the first to specifically explore parents' experience of FT-ED with an autistic YP with AN. However, it is limited by representativeness concerns of participant demographics (a bias towards mothers and White females) and while the study was open to parents and carers of young people with bulimia, we were unable to recruit any carers with this experience. There may also have been a self-selection bias within our recruitment strategy, with individuals with negative experiences being more likely to participate. We also collected limited information on contextual factors such as duration of treatment, parental neurodivergence and/or mental health presentations and the location of ED services, which would have provided a more nuanced representation of parent experiences, including information on the training and supervision of clinicians. Furthermore, this study focused on general experience of FT-ED rather than nuanced understanding of the different phases of the model which could provide a more detailed understanding of FT-ED phase specific themes. Future research extending this study within specific service structures and/or a clinical trial would allow for analysis of this contextual information. Finally, it is difficult to determine which experiences are specific to parents of an autistic child, and which may be shared experiences of FT-ED with all parents. It is likely that the parents in our study presented both specific and shared experiences.

This study is one of a series of studies exploring clinician (Duffy et al. 2025), parent, and autistic YP experiences of FT-ED (Haugaard et al. 2025), seeking to inform treatment adaptations. Similarities and differences were highlighted between clinicians and parents; for example, both raised concerns about the suitability of some FT-ED principles (externalisation and the agnostic stance) and a tension between manualisation and adaptation. Parents additionally highlighted how they can feel disempowered in the FT-ED process, potentially perpetuated by having to actively instigate adaptations within a silo of healthcare divided into autism and ED pathways. Future research exploring autistic YP perspectives will add a further insight. Collectively, it is hoped that these studies will build on previous work outlining suggested autism-adaptations to FT-ED (Loomes and Bryant-Waugh 2021) by providing a multi-perspective and experience-driven empirical understanding of how to adapt FT-ED for autistic YP. A pertinent next step is to now co-produce clear practical considerations on adaptations to FT-ED for autistic YP.