Grandparents' role in autism care

In France, grandparents of children with autism play a significant role in their families, yet they are often overlooked by healthcare professionals. More than 30% of grandparents care for their autistic grandchild at least once a week, and over 70% are involved in decisions about their grandchild's treatment.

Autism prevalence and family impact

Autism affects approximately 1% of the French population, and it is estimated that one in 166 grandparents will have an autistic grandchild. In a country that is seen as slow in developing support for autistic individuals, family solidarity is especially vital.

Supporting learning and communication

Grandparents help their grandchildren with autism by adapting activities to their abilities and learning needs. They use tools like pictograms and routines to provide a predictable environment. For example, a grandmother of a non-verbal 13-year-old boy uses pictograms to guide him through daily activities.

Encouraging social and emotional development

Many grandparents help their grandchildren develop social and emotional skills through play. A grandmother of a 10-year-old autistic boy explained how she supports his communication and helps him interact with others, even when it is challenging for him.

Re-engaging in parenting roles

Autism often leads grandparents to re-engage in their parental role, supporting their children in a parenting experience that is considered atypical. They may accompany them to medical appointments, take care of their grandchildren to allow them to work, and offer emotional support.

Seeking support and knowledge

Grandparents recognize the need for support and often seek information through online forums, associations, or training sessions. A grandfather of a 4-year-old non-verbal autistic boy mentioned considering courses to learn how to communicate using gestures.

Dealing with social stigma

After an autism diagnosis, many families face social stigma, with friends and relatives sometimes distancing themselves. Grandparents who receive support from friends often express gratitude, as noted by a grandmother who said her friends help her feel less isolated.

Online connections and challenges

Grandparents often turn to online forums to connect with others in similar situations. However, they sometimes find in-person support groups difficult, as they can lead to comparisons and increased awareness of their challenges.

Lack of recognition and support

Grandparents, who are often excluded from training and medical appointments, struggle to find their place in their grandchild's care journey. They are rarely the focus of prevention efforts, despite their central role in the lives of autistic children.

Need for systemic change

Rethinking how families are welcomed by institutions like autism resource centers and medical centers could improve the well-being of autistic children. Providing training for grandparents and avoiding blaming language could be important steps in this process.