1.1. Structural and systemic barriers.

Participants emphasised that DLD diagnosis is very much a process rather than a singular moment of decision, and all clinical participants described the importance of taking a longitudinal view on Response-to-Intervention (RtI). However, clinicians were unanimous that limited service structures, such as restricted therapy blocks and long waiting lists, prevented a timely diagnosis. Additionally, a change of staff was seen as disrupting the flow of the diagnostic process.

“ …we need to see them get through some intervention so that we know what kind of progress they’ve made. Which means that, that’s delayed, at least by, you know, them coming back in for another round of intervention, which is, you know, a year and a half, or potentially more, depending on what’s happening at the moment with services“ (FG-C3)

In this context, gathering pertinent information from sources external to clinical settings was deemed essential but was seen as challenging.

“…it’s quite hard to contact schools … and get that broader view” (FG-C2)

The DLD diagnosis is often made after “ruling out” other “disorders” (i.e., autism, learning difficulties) and may be proposed as a “working diagnosis” for some time. One challenge noted by clinicians here was access to multidisciplinary assessments which would support differentiation of DLD from other neurodevelopmental differences.

“… even psychologists would be hemming along between ASD and DLD and you’ll see that written, in psychological reports and recommend ‘A review in the future’ to kind of tease that out again” (FG-C1)

In an increasingly multilingual population, clinicians reported additional complexity in distinguishing between language exposure effects and persistent language difficulties characteristic of DLD. This requires an additional layer of exploration with families and schools to diagnose.

“what’s an exposure issue, and what is a genuine disorder” (FG-C3)

1.2. Degree of clinical confidence.

Despite clinicians having a good understanding of the criteria necessary in diagnosis there was a lack of clinical confidence in giving a diagnosis.

“I do think the diagnosis is super important … we’re not just there yet, in terms of being confident about delivering it” (FG-C2)

Limitations within individual clinicians’ confidence in giving a diagnosis of DLD was associated with a lack of confidence in unilateral diagnoses. Several clinicians noted that diagnosing without the support of a multidisciplinary team placed considerable responsibility on individual practitioners, contributing to their uncertainty.

“… very reassuring to hear from somebody else..., It’s okay to say that this is a working diagnosis” (FG-C1)

Familiarity with diagnostic profiles and observational skills used to measure Response-to-Intervention (RtI) acquired over the years results in a greater certainty around distinguishing diagnosis. Clinicians shared that the breadth of experience means greater confidence.

“it’s not outside of the scope of anyone’s role. The term has evolved and the criteria has evolved a little bit. But it’s what we have always been doing, identifying children who have a different learning mechanism for language” (FG-C3)

Lack of confidence occurs where there is a sense that the profile is complex. This tentativeness was due to a desire to be sure, underpinned by the recognition that giving a diagnostic label is a serious undertaking with social and emotional impact for children and families.

“… because that’s the worst fear, like, and I say, fear in research, but that happens, how come a child goes in with one diagnosis and then …” (FG-C4)

Continuing Professional Development opportunities were noted as having an important role in growing confidence to ‘diagnose’ DLD. Voluntary participation in entities such as the DLD SIG was valued. However, clinicians commented that the initial flurry of information following the CATALISE consensus paper was less accessible over recent years. A welcome positive support is the increased information available to share from online sources.

“[I] feel a lot more confident handing a leaflet to a parent and saying, ‘This is what I think your child has, these are the sorts of things that are making me think that.” (FG-C1)

While Theme 1 explored the structural and professional challenges involved in reaching a diagnosis of DLD, participants also emphasised the importance (and the difficulty) of what follows: communicating that diagnosis in a way that supports understanding and acceptance. For both clinicians and parents, the act of conveying the meaning and implications of DLD emerged as a further site of complexity. Theme 2 explores this communication process, focusing on how clinicians explain the diagnosis to parents, how parents make sense of it, and the varied ways in which the diagnosis is, or is not, shared with children.

2.1. Explaining DLD to parents.

The communication of the meaning of a DLD diagnosis and, importantly, the implications of this diagnosis emerged as a key area of complexity within the findings. Clinicians emphasised the importance of parents having a full understanding of the impact of DLD.

“I think it’s a heavy label for them to get their head around [...] to understand that, you know, it’s going to be a lifelong condition” (FG-C3)

However, many parents described receiving little guidance at the point of diagnosis and felt unclear about what DLD actually meant for their child:

“… we’re googling things, and we’re looking at things …. There isn’t really much. It’s very wishy-washy (...) it’s kind of a bit fluffy, DLD, you’re getting this diagnosis because we’re out ruled everything else. But what is it? Where are we going with it?” (FG-P3)

This was further complicated by the strong affective aspects of the diagnostic processes, with parents often admitting to mixed emotional responses. Despite this confusion, some parents framed the diagnosis as a relief, particularly when compared to concerns about other neurodevelopmental conditions.

‘It was kind of relief, because, to be honest, I was expecting something worse” (FG-P2)

“that fear of autism, you know, the talk of autism, of the possibility of autism” (FG-C4)

Parents are important advocates for their children, and so it is critical that they can access the DLD diagnosis for their child in a timely way and with full clarity and understanding. Many parents reported that they felt they had to ‘pester’ clinicians for more information:

“… I found that I had to kind of ask specific questions, to find out what DLD exactly was (...) if you could sit down with them on your own, like a separate meeting to the one that you have when you go in with your child (...) perhaps an hour with you and your husband (...) they can go through all the different scenarios with you” (FG-P3)

The quality and depth of post-diagnosis support in our study varied in parent reports and may be dependent upon the approach of individual clinicians, and perhaps the practice within a particular team. Some parents felt there was a definite gap between receiving a diagnosis and having this explained to them:

“…she’s just sent me the report (...) there was no follow up from her” (FG-P3)

Parents often felt responsible for initiating their own understanding and expressed a desire for structured, dedicated conversations about their child’s diagnosis.

2.2. Explaining DLD to children.

Despite having an unclear understanding of DLD themselves, in the majority of cases, it was the parents who were left with the responsibility of communicating about DLD to their children. In effect, parents were the default communicators to the child regarding the reality of the DLD diagnosis and of its implications. Whether or not, and how, they shared this knowledge with their children, depended on their assessment of children’s level of understanding, the impact of this conversation (for example, at the child’s transition to or from DLD class to mainstream school), and also parental own understanding and confidence. For example, one parent noted:

“but now, the fact that he’s kind of much easier to understand, and he’s in his last year in the language class, and that we just had DLD Day we do say that DLD a bit more now” (FG-P3)

Concerningly, however, these conversations did not always happen:

“we didn’t really speak about it (...) not that he wouldn’t understand but, like he’s never asked why he had to change schools or why he’s doing speech” (FG-P4)

This suggests that in some families, the diagnosis remained unspoken—either due to perceived developmental unreadiness or parental discomfort. This may have impacts for the child’s identity, self-image and levels of future autonomy, as well as possible future relationship challenges between parents and children.

Clinicians noted that older children may be more included in the process, and a few clinicians noted that they would sometimes have a session with the child and invite them to attend a ‘DLD and Me’ group, but both clinicians and parents felt that children younger than about seven or eight years of age were too young ‘to understand’ it.

“The speech and language therapist would kind of talk [to the parent] in front of the child a lot about like, the diagnosis, and then also about whether or not they’d get into the language class, and they just, just found that a little bit tough’ (FG-P4)

These findings point to the emotional and informational complexity of communicating a DLD diagnosis, and the level of diversity involved across the participants. Many parents felt under-informed and unsupported, often left to make sense of the diagnosis. Concerningly, they often were left to explain DLD to their child. This highlights the need for clearer, more consistent communication practices following diagnosis.

3.1. Access to service provision and supports.

Clinicians and parents universally agreed that the usefulness of a DLD diagnosis was primarily linked to the possibility of more intensive therapy and crucially, access to a small group teaching that is offered in a language class setting.

“I was very grateful that the diagnosis came just in time for her to be eligible for the language class.” (FG-P3)

The experience of being in a language class was seen as important in facilitating children’s understanding and acceptance of DLD, bringing a sense of reassurance and belonging. Similar findings were seen in Ireland in relation to the experience of children attending reading classes [28]. However, in Ireland, only a small proportion of children with DLD attend language classes and a DLD diagnosis does not guarantee a place in these classes. This lack of consistency of support outside of language classes was highlighted by many clinicians.

“I don’t know that the schools are really treating a child with DLD in a specific way” (FG-C3)

This suggests that outside of specialist settings, the diagnostic label does not reliably translate into differentiated support in mainstream contexts—raising questions about the structural recognition of DLD in general education.

Both parents and clinicians noted stress around transition points and sudden withdrawal of support permeated parent narratives.

“Every year they try and pull resources off him every single year” (FG-P1)

Parents stressed that they continued to fight for children with DLD to be acknowledged in relation to access to various educational accommodations (for example, automatic exemption from the compulsory study of Irish).

3.2. From label to identity: building self-advocacy in children with DLD.

The DLD Awareness Day was mentioned by both clinicians and parents as especially important for building confidence and a sense of “ownership” of DLD diagnosis for children who have it. Clinicians emphasised that the capacity for children and young people to understand and communicate their own needs was not only a therapeutic goal, but a strategic response to systemic limitations in service provision. As one participant explained:

“… ultimately, we’re going to be able to give them very limited amounts of therapy” (FG-C2)

In this context, supporting children (particularly adolescents) to develop confidence in self-advocacy was seen as an essential therapeutic outcome. This was not presented as a late-stage add-on but as a long-term approach embedded from early stages of intervention.

“So, from as young an age as we can, we would start that, and when they get up into the teenage years then, it’s more, a lot more focused on that than it would be impairment focused therapy” (FG-C2)

Clinicians described situations in which children with DLD had experienced mental health difficulties or poor school engagement due to a lack of understanding around their communication needs. The diagnostic conversation, in these cases, was reframed as an opportunity to build understanding and agency.

“… I did spend quite a bit of my first session kind of talking through it with her and with her mum and, kind of talking through almost like advocacy about how she could advocate for herself. How she could, you know, talk to her teachers about this, things like that” (FG-C1)

These accounts suggest that, when embedded meaningfully, a DLD diagnosis can support more than access to services. It can enable children to participate more fully in their own learning and social environments by giving language to their experiences and strategies to navigate them, thus supporting autonomy and agency across the developmental trajectory.

4.1. Systemic gaps in DLD awareness and recognition.

All participants emphasised the importance of fostering greater awareness of DLD among other healthcare professionals, in the education sector, community and the wider society. Participants described DLD as underrepresented in public discourse, lacking the policy presence or advocacy infrastructure seen in other neurodevelopmental conditions. Both groups noted the DLD Awareness Day had positive impacts on awareness and on support. Efforts to raise awareness were noted to be critical, with one clinician noting:

“… not just the people who were attending kind of from the community, but actually, our own kind of colleagues in healthcare” (FG-C1)

However, while initiatives like DLD Awareness Day were valued, they were insufficient in themselves, and DLD was seen as needing a more national level recognition, similar to, for instance, advocacy for autism, as well as inclusion in medical training. As one parent noted:

“I’m an intellectual disability nurse, so I would be very au fait with speech and language, it would be part of my job, all my life, I used to watch and stuff, but I had never heard of DLD until he was diagnosed” (FG-P1)

4.2. Enhancing recognition in the education sector.

In relation to the Education sector, both parents and clinicians stressed the necessity of teacher education and teacher professional development on DLD. This should include embedding the knowledge on DLD in initial teacher education. Parents felt that this advocacy responsibility is currently placed on them:

“It shouldn’t have to be parents that have to educate them” (FG-P2)

Considering that parents themselves lack clarity on DLD, this is not just inadequate, but also not equitable:

“Every year we have the same conversations with the teacher” (FG-P1)

Both clinicians and parents offered concrete suggestions for change, including (a) the development of educator resources, (b) formal education on DLD in initial and continuing teacher education, and (c) the creation of peer support networks. These proposals are further discussed in the implications section below.