nothing about us without us
Who: Dugdale and colleagues
Title: Intense Connection and Love: The Experiences of Autistic Mothers
There is some research into experiences of autistic mothers, but there are no studies which ask autistic mothers about their experiences of being an autistic mother.
They interviewed nine autistic women who became mothers through birth or adoption. Many of their children were also autistic, or undergoing assessment.
autism fundamentally impacts parenting
• there are specific strengths and difficulties experienced by autistic mothers
• they felt strongly bonded to their children, autistic or non-autistic, through similarities between them, and felt strongly attuned to their needs
• they felt autism was an intrinsic part of themselves
they had to battle for the right support
• they had all felt misunderstood, judged, or dismissed in their attempts to get support
• a good support system consists of people who listen, who understand autism, and who respect the individual as the expert on their own experience
“professionals don’t believe you if you just say it. they want you to perform it.”
parenthood is a process of development & acceptance
• the participants were diagnosed after becoming parents, and this helped them to move from guilt and self-blame towards self-acceptance
• they felt being a parent had helped their self-growth and acceptance
• some had to adapt to meet their children’s needs, and they were proud of this
parenthood has ups and downs
• they all felt intense, loving connections to their children, describing it as “strong”, “overwhelming”, and “complete adoration”
• they all had some difficulties, such as with supporting their children’s autistic needs when they clashed with the parents’, maintaining social relationships with neurotypical parents, and the emotional impact of parenthood, like imposter syndrome.
They concluded that there should be a higher standard of education, training, & understand of autism in antenatal (pregnancy) & perinatal (after the birth) care.
Autistic individuals are the experts in this experience, and so should be involved in the development & delivery of this training.
Ante- and perinatal care should adopt a difference model of autism, and each individual should be supported with their specific difficulties.
Despite the challenges of motherhood, the participants & their children had a shared experience of enduring connection and love.