Parenting can be one of the most isolating experiences of our life. Parenting a child on the autism spectrum can multiply that isolation by a hundred. There just don’t seem to be words that adequately explain what our life looks like- and if the words did exist we would be too exhausted to remember and put them together coherently. It is difficult when other parents are telling cute anecdotes and sharing the activities their child is enrolled in and you can’t relate.
Social events are awkward as friends ask about what sports or activities your kid is doing expecting you to regale them with tales from the basketball court and you only have stories of social skills groups and Special Olympics. It’s hard to relate to them complaining about how exhausting it is that their child is in honors classes, doing college visits, playing competitive volleyball, is in orchestra, and volunteers with children at their church. Sometimes we feel a sense of FOMO (Fear of Missing Out) and grief that we won’t be having those parenting experiences. Sometimes I think how unbelievably exhausting and boring their lives sound though.
When we feel like we can’t be honest or understood by others it is difficult to build a real connection and community. When I was earlier in my parenting journey I gave a polite answer when asked how my son was. I would say something about how we were trying some new treatments or he was really into Minecraft. The other person would feel comfortable and I felt pretty empty. Now I tell the truth. Maybe not the complete unfiltered truth, but I say when we are in a difficult phase.When we start to share our reality we give others the opportunity to give us support and we form a more real connection. Many parents feel they need to give the highlight reel of parenting and when you say what is real they get to as well.
It is incredibly valuable to find other parents navigating parenting a child with autism. There are virtual communities on social media (some are more helpful than others). Seek out local groups for parents with autism. These may be support groups or more social groups where everyone goes for dinner and to talk. There are workshops and conferences that welcome parents. Books and podcasts written and created by parents of children with autism are also available. As a parent of a child on the spectrum I have found that having my own therapy is invaluable. I need someone I can be honest with about my challenges, fears, and frustrations without fear of judgement. I don’t want pity or to be told how amazing I am. I just want to be heard. You deserve to be heard too.
