Does Developmental Language Disorder (DLD) go beyond language difficulties? It is a question that deserves our full attention.
For some people living with DLD, the challenges are not limited to understanding or expressing themselves. Difficulties with working memory, organization, planning or emotional regulation can also make daily life harder. Yet these realities are not always recognized or explained to families.
Since I joined Regroupement TDL Québec, my conversations with parents of children, teenagers and adults living with DLD have fuelled a growing concern: do we sufficiently understand what lies beyond language?
Language remains at the heart of DLD. This is essential to remember. But I also see it as a red warning light: it catches our attention and tells us that we need to try to understand what is going on.
The image of the iceberg illustrates this reflection well. What we see above the surface is only part of the reality. Other difficulties can remain invisible, sometimes for years.
If we stop at what we can see, how can we hope to understand the person’s whole reality?
When invisible difficulties become very real
In my previous blogs and editorials, I have shared on several occasions my thoughts on DLD, on care and support, and on the need to broaden our view beyond language. Today, these reflections take on an even more concrete dimension through the testimonials I receive.
Parents are trying to understand why their teenager is experiencing difficulties that seem to go beyond language. Adults contact us after losing their job or going through major difficulties at work. Some have only just received a diagnosis, after long feeling that something was escaping them.
They talk about difficulty getting organized, remembering instructions, handling several demands at once, planning their tasks or coping with the unexpected. Some also have difficulty managing their emotions in demanding situations.
For years, many believed these difficulties were simply part of their personality. For them, it was their normal.
However, some of these manifestations may be associated with weaknesses in other cognitive functions, including executive functions and working memory. This does not mean that all people with DLD have the same difficulties, but these dimensions deserve to be considered when the situation warrants it.
How many people could have been better understood and better equipped if these possibilities had been raised sooner?
A diagnosis should open doors, not narrow our view
I fully understand that every professional must respect their scope of practice. Speech-language pathology plays an essential role in the assessment of and intervention with people living with DLD. I do not in any way question this expertise or its importance.
However, I deeply believe that support cannot be limited to speech-language therapy when other needs are present.
Parents rely on the professionals who support them. They expect to receive information to understand the diagnosis, recognize possible difficulties and know which resources to turn to.
It is not a matter of asking every professional to become a specialist in every discipline. It is about recognizing that a difficulty observed within our own field of expertise may justify a referral to another professional.
A psychologist, neuropsychologist, occupational therapist, remedial teacher (orthopédagogue), social worker or special education technician can, depending on their scope of practice and the needs identified, help to better support the person.
The intervention plan must take the whole person into account, not only their language difficulties.
That is why I want families to be better informed from the time of diagnosis, to know what resources are available and to be referred to the appropriate professionals. Community organizations also have an important role to play in supporting them along this journey.
When adolescence and adulthood reveal the difficulties
At school, many young people benefit from a structured environment, accommodations and adults who know their needs. Parents are still very present to organize schedules, remind them of deadlines and help them overcome obstacles.
Then comes the transition to higher education, employment and adult life.
Expectations change. They must plan, get organized, understand instructions that are sometimes complex, manage multiple responsibilities, adapt to the unexpected and cope with less predictable environments.
A parent once told me that, for their child, this transition had been a real shock. This testimony echoes those of other families who see how hard reality can become when support decreases and demands increase.
What if we had better prepared these young people?
What if, from the time of diagnosis, families had been made aware of the difficulties that could arise in other areas of life? What if young people had been able to develop strategies suited to the way they function earlier on?
We cannot prevent every difficulty. But we can help ensure that needs do not remain invisible for years.
Science evolves. Our understanding must evolve with it!
It is important to remember that the term Developmental Language Disorder (DLD) is part of the evolution of international terminology, notably following the work of the CATALISE consortium published from 2016 onward and its recommendations. This process helped harmonize the way persistent language difficulties are described and the way the people concerned are identified.
This change was not simply a matter of vocabulary. It was part of an effort to better identify the people concerned, make their profile easier to understand and promote better recognition of their needs.
The word developmental invites us to consider the disorder from a neurodevelopmental perspective. It reminds us that to understand a person, we must also take an interest in their development and the complexity of how they function.
So I ask myself this question: if our knowledge and our terminology have evolved over time, why would we hesitate today to deepen our understanding of DLD?
I notice that some people publicly question the statements of experts who invite us to look beyond language. Of course, science must be questioned rigorously. Hypotheses must be examined and conclusions supported by the available data. But this rigour must also go hand in hand with openness to new knowledge.
Understanding in order to convince: an ongoing quest
When I meet people and present my background, I often point out, with humility, that I do not have the university degree or the doctorate that would give me scientific expertise on DLD. What I do have, however, is a deep desire to understand what DLD is, a curiosity that drives me to learn, discover and ask questions.
As I wrote in a previous blog: to be convincing, I must be convinced. And to be convinced, I must understand! I need to understand DLD as a whole, beyond what is immediately visible.
When my instinct, my observations in the field and my logic lead me to believe there is something else to explore, I cannot simply stop there. I want to dig deeper, ask questions, test my thinking against the available knowledge and seek to understand better. Over the years, this is what led me to publicly raise the question of DLD beyond language, knowing full well that this reflection could draw criticism.
Today, the content and tools shared by Magali Zerrouki, neuropsychologist and speech-language pathologist, and by Dr. Dave Ellemberg, neuropsychologist, offer me professional perspectives that echo many of the questions I have been carrying for a long time.
I do not claim to have all the answers, nor to have demonstrated myself what I am putting forward. What matters to me is to see these questions addressed and brought to light by professionals who have the knowledge and skills needed to explore these issues in depth.
So it is not simply Lyne Pelchat inviting you to look beyond language. It is also an invitation to listen to professionals, to discover the content they share and to continue the reflection based on their expertise.
It is in this spirit that I would like to introduce you to the Comprendre-Ensemble animation as well as the PDF document presenting the DLD iceberg approach and the realities that lie beyond language.
My call to professionals, parents and our society
To professionals, I extend this invitation: without stepping outside your field of expertise, dare to ask one more question. Could the difficulties observed justify an additional assessment? Does the family know about the other resources available? Do they know who to turn to?
To parents, I want to remind you that you have the right to ask questions, to understand your child’s profile and to ask for help when difficulties persist beyond language.
To teenagers and adults living with DLD, I want to say this: your difficulties define neither your intelligence nor your worth. If some situations require considerable effort from you, you deserve to be heard, understood and equipped. You do not have to believe that everything rests on your shoulders.
Finally, as a society, we must improve the flow of information, from the time of diagnosis and throughout the life course. We must foster interdisciplinary collaboration and recognize that a person’s needs can change over time and depending on the contexts in which they live.
I know that resources are not always accessible and that professionals deal with many constraints. But this reality must not stop us from doing better!
Language is the red warning light. It catches our attention and invites us to act. The image of the iceberg, for its part, reminds us that a significant part of the reality may remain below the surface. It is up to us not to stop at what is immediately visible, to ask the right questions and to give people living with DLD the means to better understand how they function.
So, if we know today that DLD can have impacts that go beyond language, can we still afford not to look at what lies below the surface?
