October is an important month for the Developmental Language Disorder (DLD) community. This year, International DLD Awareness Day will be marked under the theme “Together for DLD”, while the 11th Quebec Developmental Language Disorder Week invites us to go “Beyond prejudice! DLD persists throughout a lifetime”.
Two themes that, to me, fit together perfectly. Because going beyond prejudice starts with understanding one essential thing: Developmental Language Disorder doesn’t go away with age. It doesn’t go away because a child has received services or because speech-language therapy has come to an end.
DLD persists throughout a lifetime.
Its manifestations, its impacts and the person’s needs can, however, change over the years. The challenges experienced in childhood aren’t necessarily the same in adolescence or adulthood. Demands change. Environments change. Studies, work, social relationships, independence and life’s responsibilities can bring new challenges to the surface.
I particularly remember a conversation with a parent that stayed with me. They told me that, throughout their child’s schooling, he had benefited from specialized classes, accommodations and an environment that had learned to take his needs into account. These measures had made a real difference in his daily life.
But when their son left school to enter the job market, the parent quickly realized something: their son was stepping into a whole new jungle.
A jungle where the accommodations he was used to were no longer necessarily there. An environment that was not automatically adapted to his reality.
And that’s where we need to ask ourselves some questions…
Preparing a person to leave the school system isn’t only about helping them earn a diploma or develop professional skills. It’s also about preparing the environments that will welcome them next. The move into the job market shouldn’t be the moment when adaptations disappear and the person suddenly has to learn to function alone in an environment that no longer takes their needs into account.
The end of follow-up services therefore doesn’t mean that the person no longer needs understanding, strategies, adaptations or accommodations.
This is exactly where we must go beyond prejudice!
DLD IS BIGGER THAN LANGUAGE
When we talk about DLD, language is obviously at the heart of the reality. But it doesn’t represent the whole person. And this is precisely where interdisciplinary assessment and follow-up take on their full meaning.
A mother I’ve had the privilege of talking with regularly for several years often tells me about her teenage son’s journey. Over the years, she was told on several occasions that it might be worth having him reassessed. Some even wondered whether what he was experiencing looked more like autism spectrum disorder than Developmental Language Disorder.
Every time doubt crept in, she went back to see the neuropsychologist who had taken part in his assessment. The answer was always the same: her son had undergone an in-depth assessment, carried out over a fifteen-day period by an interdisciplinary team. Several professionals had been able to observe him, analyze his functioning from different angles and pool their expertise before arriving at the diagnosis.
Yes, he had Developmental Language Disorder, but also other particularities and co-occurring conditions that were part of his profile.
His journey struck me because it illustrates something essential: a diagnosis should never be reduced to a single dimension of the person.
I like to use this image: the cognitive function of language is the big flashing red light in a pink ocean. The red draws our attention to DLD and tells us there’s something to understand, something to look at more closely. But around this diagnosis, there may also be other difficulties, other affected functions, other needs and other realities that have a significant impact on the person’s life.
The pink represents everything that lies beyond the DLD diagnosis.
And that’s why the pink ocean must turn blue. We need to be able to look at the whole of the person’s reality, and not only the first signal we identified.
From this perspective, interdisciplinarity isn’t a luxury. It’s essential. Each profession brings complementary expertise: speech-language pathology provides a detailed understanding of language and communication; neuropsychology helps us better understand cognitive functioning, executive functions, attention and memory; occupational therapy makes it possible to observe the impacts on daily functioning. Depending on the needs, expertise in resource teaching, psychology, social work, psychoeducation, medicine, special education and other fields can also shed useful light.
These perspectives don’t compete with one another. They complement one another.
But this approach shouldn’t stop once the diagnosis has been made. It should be able to continue in the environments where the person lives, learns and grows.
And this is where I see a major issue in Quebec: the bridge between the health care system and the school system.
This teenager was eager to learn. He wanted to learn. Yet his schooling was marked by decisions that didn’t always seem to take his actual profile and abilities into account. Because schools are still too poorly equipped to understand the impacts of DLD on learning, and the adjustments and accommodations it requires, he ended up in what I call, with a touch of irony but above all a great deal of sadness, a “touski” class (from the Quebec expression “tout ce qui reste”, meaning “whatever is left over”).
A class that groups together young people with very different realities: intellectual disability, autism spectrum disorder, behavioural disorders and language difficulties, as if having a language challenge could be a sufficient common denominator to determine a student’s educational path.
But DLD isn’t an intellectual disability!
Difficulty understanding and/or expressing language doesn’t mean that the person struggles to understand the world, think, learn or reach their potential. Language and intelligence aren’t one and the same.
If we recognize the importance of an interdisciplinary team to understand a person within the health care system, why should this expertise disappear when they walk through the school door?
The bridge must exist.
The team that helps understand the young person must be able to work with the people who support them every day at school. Teachers and school administrators need the tools to understand how DLD shows up, its impacts on learning and how to learn to do things differently.
And we know it’s possible.
Through my exchanges with the Pôle territorial Le Près Serré in Belgium, I’m discovering a structure that allows interdisciplinary teams, present in different school regions, to support educational settings, equip teachers and help students according to their needs.
This approach shows that it’s possible to build bridges between areas of expertise, schools and the needs of young people.
So I ask myself a very simple question: if it’s possible elsewhere, why couldn’t we do it here?
Quebec has the expertise. We have skilled professionals, teachers who want to do the right thing and families who know their reality. What we too often lack is the bridge that allows these areas of expertise to meet and work in the same direction.
Because DLD is an invisible neurodevelopmental disorder that affects an essential cognitive function: language. Its effects can reach far beyond words themselves and affect learning, executive functions, social relationships, independence and daily functioning, depending on each person’s profile.
A diagnosis can give us a direction. A team can help us understand better. But that understanding then has to make its way to school, to work, to life.
TOGETHER, BUT TOGETHER HOW?
To me, “Together for DLD” means joining forces. Parents know their reality, people with DLD know theirs, teachers know their setting, professionals bring their expertise, practitioners know the field, employers know the realities of their workplace and organizations carry the issues and the needs.
Each of us is a link in the chain. We don’t all need to know the same things. We need to pool what each of us knows and knows how to do.
And to you, parents, families and people with DLD, I want to say it clearly: your voice matters. When we ask you to share your story, take part in research, respond to a consultation or simply tell us about your reality, it’s to move issues forward, make the needs heard and make sure our actions reflect lived reality.
Help us help you. Your link matters!
DLD MUST NOT BE VISIBLE ONLY IN OCTOBER
For 40 years, Regroupement TDL Québec has worked to make the invisible visible, raise awareness, defend rights and advance the understanding of DLD in Quebec. But DLD doesn’t take a break after Quebec DLD Week. It must be visible 365 days a year, 12 months a year.
The child becomes a teenager, then an adult. School gives way to further studies, work, independence and the demands of adult life. The need to understand and adapt doesn’t disappear with the calendar.
That’s why “Together for DLD” can’t be just an October theme. It’s a way of working, thinking and acting, well beyond this awareness period.
IT TAKES A WHOLE COMMUNITY
We often hear that it takes a village to raise a child. I’ve been saying for a long time: it takes a whole community to support a person with DLD.
So the question is simple: What’s your link in this chain?
Because understanding DLD is the beginning. Taking action is what makes the difference. An accommodation, an adaptation, a different way of communicating, taking the time to understand, learning to do things differently: that’s how things change.
Behind every diagnosis, there’s a person. Behind every person, there’s a story. And sometimes, all it takes is listening to that story to better understand what living with DLD really means.
I invite you to listen to this mother tell us, in her own words, about her son’s journey, the challenges they faced and everything that had to be put in place to help him move forward.
Take a few minutes to listen to her. You may come to see DLD differently.
Together for DLD. Not only in October. All year long!
