I am the mother of a boy who has an autism spectrum disorder (ASD), which makes parenting a very different experience than parenting his younger brother. With my younger child, their father and me basically follow our intuitions, which works fine; but for our child with ASD we really needed retraining so as to adapt our parenting style to his needs and his worldview. Parenting a child with ASD gave me a richer perspective on life, and has helped to put human vulnerability and human diversity more central in my thinking; but it is also often a challenge in daily life to find the extraordinary amount of energy, patience and self-control one needs to parent a child with autism. So far we have received great support from health care/special needs professionals and some friends, but we also experience that many people around us think rather lightly about what it takes to raise a child with an ASD, especially a child who passes as not having an ASD (like our son).

My own-bodily experience with disability has (so far!) been limited to a 2-year stitch of severe RSI when I was writing my PhD thesis (it got so bad I couldn’t turn a key), and 6 years (between the ages of 12 and 18) in which I had a condition called chondromalacia patella. This was caused by a misalignment of the knee when I grew from a child into an adolescent, and solved itself when I stopped growing. In this period I could walk short distances but not do any other physical activity involving pressure on the knees. Several of my peers believed that I was making this up, since the condition was invisible.