Parents with Autism of Children with Autism

Background:   Despite the high heredity of autism, relatively little is known about parents with autism of children with autism. There are reasons to expect beneficial effects of an autism diagnosis in parents, as they are more aware of the disorder and likely have access to care and treatment. However, the social communicative problems of autism may also be a burden for parental and child wellbeing.

Objectives:  To explore the characteristics and overall quality of life of parents with autism who have one or more children with autism.

Methods:   Using data from the Netherlands Autism Register, we analysed 211 parents with autism (135 fathers, 76 mothers), 191 parents of who had one child with autism, and 20 who had 2 children with autism. We analysed their wellbeing and living standard (employment, social relations) as well as their diagnostic and demographic background.

Results:   Preliminary findings indicate that parents with autism who have a child with autism generally reported average or above average intelligence and had paid employment in almost half the cases. Their self reported wellbeing and social relations were not markedly high. The interplay of these factors will be analysed further and presented.

Conclusions:   While having autism may hinder one’s outcomes in life, having a child with autism offers many additional challenges that have not been addressed before in the literature. We will highlight the advantage and the disadvantage of autism in both parent and child, and provide recommendations for future studies on this understudied topic in autism research.