This is an edited version of a post originally published on Respectfully Connected
I no longer feel alone as a parent of an autistic child, but there was a time when I did.
When my son was first identified as autistic, I looked for parents in similar situations. This is probably the natural thing to do. But I did not find supportive places. What I found were groups where pity parties were the norm. In these groups, it was acceptable to deny a child’s rights to privacy and dignity in order to garner sympathy. Parents seem completely comfortable sharing their children’s worst moments, but are far less concerned with celebrating their children’s best moments. Those spaces were not about figuring out the best ways to support a child; they were all about parents commiserating over their children who they seemed to blame for all their hardships. Those were toxic places, and so I removed myself from them.
That’s when I felt alone.
There aren’t many spaces where parents of autistic children can interact with each other without expecting pity or sympathy. Telling people that my son is autistic is often met with comments expressing sympathy. Explaining to people that my son is the most awesome person I know often causes confusion. The majority of things that are written about autistic children are dehumanising. When anyone expresses dismay at the continual negativity, the excuse is “we don’t want parents to feel alone”. Well, I am a parent and all those things make me feel alone.
I didn’t want sympathy, or pity, or confusion from other people. I wanted to be able to tell people about all the awesome things my son does. I want to be able to share his unique way of thinking about things, and to celebrate every single fantastic thing with me as my son travels through life learning about his world.
I’m not pretending that parenting isn’t hard. Parenting is hard, but that has little to do with a child’s neurology and a lot to do with the fact that a child is still developing skills. Sure, autistic people develop their skills differently and a parent might have to provide different forms of support, but that’s part of being a parent. Too often we focus on how hard parenting is without realising what an amazing privilege it is.
Some people might think that I am being judgmental by writing this. I am being judgmental because those toxic ‘support’ groups are wrong. They contribute to the harmful stereotypes and the negative narratives that dominate any discussion about autism. They contribute to the stigma that we face every day.
I am no longer alone, and I am grateful for that. There are people who listen to me tell them about all the awesome things my son does, appreciate his unique way of thinking about things, and help me celebrate the amazing person my son is.
I am no longer alone, but it should not have been as difficult as it was to find like-minded parents to share the joy that I experience in raising my son.
I know that there are other parents out there who are like me, and who feel alone for the same reasons that I used to feel alone. So to those parents, I want to say: Please don’t let the negativity consume you because you are not alone. There are other parents who accept their amazing children for who they are. There is another way, and it is full of love and joy.