Support for those caring for a loved one with autism spectrum disorder
According to the 2019 Canadian Child and Youth Health Survey (CYHS), one in 50 Canadian children and youth under the age of 17 had been diagnosed with an autism spectrum disorder (ASD). In Quebec, the prevalence of ASD for the same age group was 1.2 per cent to 2.2 percent. Parents, grandparents, siblings, and friends supporting a child or children living with a temporary or permanent disability are among the 1.5 million caregivers in Quebec.
As part of World Autism Month, it is important to highlight the ongoing involvement of those around a person with an ASD. The caregivers for these people (parents, grandparents, siblings, friends, etc.) often find it difficult to see themselves as such. They take on the responsibilities, often without realizing all the tasks they take on, and they do so by normalizing their involvement with the person with ASD.
Being a caregiver for a person with an ASD means being involved with greater intensity in a diversity of fields (education, rehabilitation, stimulation, transportation, help with hygiene, feeding, etc.). According to the 2019 CYHS, children with ASD were three times more likely than those without ASD to have another long-term health problem, “including asthma, diabetes, epilepsy, anxiety disorders (such as phobias, obsessive-compulsive disorder, or panic disorder), mood disorders (such as depression, bipolar disorder, mania, or dysthymia), and eating disorder (such as anorexia nervosa or bulimia), a learning disability or difficulty, attention deficit disorder or attention deficit hyperactivity disorder (ADD/ADHD), fetal alcohol spectrum disorder, and any other problem.” All these conditions add considerably to the caregiver’s responsibilities towards the affected person.
In many cases, the caregiver must fulfill this role over a long period of time. As a result, their involvement becomes very demanding and energy consuming. This can lead to exhaustion, isolation, and even deep psychological distress. For these reasons, it is vital that caregivers are supported in their role.
Les Aidants du Haut-Saint-Laurent is there to offer services to help caregivers find assistance and comfort.
*This article was published in the Gleaner newspaper on April 3rd, 2024.
Newslettre 25th anniversary
Les Aidants du Haut-Saint-Laurent is very pleased to celebrate its 25th anniversary this year. After several months of design work, we are excited to share our new visual identity with you. The organization is officially unveiling its new name and logo to the community. You have the privilege of being the first to read our special edition newsletter which is a review of our journey over the years, our evolution, and our new features.
Being a caregiver: Every journey is unique
Embarking on the caregiver’s journey is an experience that can come with unimaginable hardships. The caregiver undergoes many transitions, ranging from the onset of the loved one’s illness, the shock of the diagnosis, understanding the disease, and then taking the necessary steps to care for them. The role of the caregiver is one of exploration that is in constant evolution. Unique on to itself.
As the journey unfolds and responsibilities accumulate, the caregiver finds themselves unprepared for their role. The motivation to care for their loved ones challenges them to push their kindness, patience, and tolerance to the edge. The level of dedication displayed by the caregiver comes at the cost of their values, needs and limits. Faced with the obstacle of overcoming exhaustion, they begin to feel overwhelmed.
The Caregivers Journey : Being a caregiver without realizing it
Why is it so difficult to identify ourselves as family caregivers when it is the intuitive thing to do for a loved one? Compassion, empathy and being of service come naturally to those with a strong sense of family and community. Whether it be a parent, a spouse or a close friend that is declining in health or has a debilitating disease, the busiest one is usually the first to step in. The journey starts here without even a thought of how it will affect us in the long run.
Often, when a loved one becomes ill or declines in health, complete focus is placed on their care and/or recovery. Without even a thought, does the caregiver question their own needs. (That would seem selfish).