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.