This is a much different blog than I anticipated writing. Two days ago, I (Robin) posted a reaction to a recently shared video of a mother crying in her car about her experiences parenting her autistic child. There was a reaction I did not expect. A post from my mostly-private Facebook page, where I have 200 friends, went viral. The reactions fell into two camps: Autistic people and allies who resonated with my critique and parents who reacted strongly against what I was saying. The parents overwhelmingly felt it was this woman’s right to “vent” about her difficulties and to “get support.” What I want to accomplish with this blog is not to venture into an ideological battle of whose needs are more important, but to argue that parents and kids are struggling for the same reason, and that FDM actually addresses both in a meaningful way.
Parent Complaint: Inaccessibility
The parent in the video describes an event where her child has a meltdown at an event to meet Elmo. My first thought is, “How was the event set up?” Inaccessibility lies in society. Perhaps the event needed two Elmos: one in a large room, and one in a small room where families can make appointments. Perhaps the line was too long. Perhaps the ceiling was too tall. By using FDM, parent get to know what these issues will be for their child, and can plan to accommodate their kids. The problem here is not the child, its the event. This paradigm shift is essential to this work. When events are accessible, everybody wins.
Parent Complaint: Loneliness
The parent in the video also complains about her child’s lack of community. She worries that no one will come to his funeral. No doubt, in the current way most spaces “do Autism,” parents and children are alienated. This is a result of cutting Autistic children off from their natural socialization and community. When typical “social skills” programs teach children that acceptance and socialization is predicated on neurotypical presentation, this creates stress. FDM honors Autistic socialization and helps children and their families form authentic communities of support. Inclusive education, acceptance and authentic socialization helps both parents/caretakers and children.
Parent Complaint: Self-Injury/Aggression
Parents also complained about how “We don’t understand their kid’s behaviors.” We do, and we know that behavior is communication. In a FDM approach, we look at what is causing the frustration for the child and create supports in this area. It might be understanding sensory needs, or providing a means to communicate, or figuring out what accommodations they need to be successful in that space.
Ultimately, we want you to enjoy your lives with your children and we are offering a methodology for you to do that in a healthy, affirming way. Foundations for Divergent Minds was created precisely to provide a better way and to help make the invaluable perspective of Autistic activists and Disability Scholars accessible and usable. We need to push back on the fear and resentment and create the world we want for our kids. We owe them something better. And that starts with parents and professionals. The way we talk about our kids will become what other people internalize as okay. Change the language, change the game, change the way we support kids. Join the work of this movement.