A New Conversation
Yesterday we launched our Sensory Awareness Month campaign with the central hashtag #itsnotautism. Our intention was to challenge people to start differentiating between individual differences in every expression of humanity; however our intentions were not clear enough and this hashtag offended many readers.
- Firstly, we want to simply say Autism is not a dirty word.
- Secondly, we want to say that we hear you. Without context, this hashtag came across as stigmatizing rather than embracing neurodiversity.
- Thirdly, we want to say thank you, thank you so much for talking to us about this, for taking the time to make your points, and for answering our messages when we reached out to you.
We do not want to shut this conversation down because even though it is difficult, it is important, and it must continue if things are ever going to change. So, while we have taken the meme down out of respect and a desire to cause no further offense, we also want to provide a platform for your voices on this topic. So please, keep messaging us and keep sharing with us. We are listening.
Kieran Rose, an adult on the autism spectrum and a blogger, wrote in and gave us this great advice:
“Rule of thumb with all neurodiverse communities: speak to us, speak through us, but don't speak for us. We need to be empowered and enabled.”
So, let’s discuss the first point. Autism is not a dirty word. We were challenged by some readers who were concerned that we were feeding into the ‘I hope it’s not autism’ concerns of many parents. We were challenged by others that singling out autism communicated underlying negativity regarding the diagnosis. So, we want to be clear on this point. Autism is a neurological variation, an expression of human diversity, and not something to be stigmatized or shamed. An accurate Autism diagnosis brings freedom and understanding for many. Mario Cirrus, one adult on the autism spectrum who talked to us about his difficulty with our hashtag, describes this beautifully in his blog post An Analogy to Explain Autism.
Correct diagnosis should be freeing and enabling, and autism and the autistic identity is beautiful and needed. A world dominated by neurotypicals would be sadly homogenous and lacking in such important variety and color.
Many people did comment positively with regards to this campaign. Debbie Venters-Scott, from Scotland, has found that her daughter's sensory processing difficulties have been constantly dismissed as simply ‘part of her autism’, with no attempts ever made to assess, support or provide treatment for what exactly her needs might be. Many of you have experienced this kind of dismissal of your sensory processing challenges. So that’s where we are moving to now, with the #UnderstandSPD emphasis. Enabling, empowering, and advocating, and hopefully this time we will be clear in our message.
Another autistic blogger who wrote in about this said:
“Funnily enough, I think this hashtag that has been perceived as 'not great' is possibly a really good starting point for discussion. It might give you guys an audience to contribute to that bigger conversation that needs to be had.” - Point Hacks and Autism Friendly Family Travel
We are committing now to continuing to listen, to continuing to have this conversation and we will do everything that we can to do it respectfully and reciprocally.
We want to end with some feedback that really resonated with us as important:
“It is important to be non-divisive in a community that really REALLY needs to support one another.” - Faith, Rantings of an ADHD Mom
So say we all.