I wondered about the actually autistic tag as I had not come across it until I started this blog on WordPress earlier this month. Then I had an email from An Autism Observer and I queried this with her. Thank you An Autism Observer for adding yarn and pencil to Actually Autistic Blog List and for sending me the link to Alyssa’s blogpost.
I’ve copied and pasted the entire post but do go and see the original post that can be found here.
Citation: Hillary, Alyssa. “Why actually autistic tag” Yes, That Too. 2 Sept 2014; http://yesthattoo.blogspot.com Accessed 28 Aug 2017
“I got a couple hits from someone searching “why actually autistic tag.” I’m not entirely sure why I got those hits, because there are lots of Tumblr posts that answer the question directly and I haven’t done so here yet. I’m not sure if I did on Tumblr either. But, if people are going to be finding my blog by asking that, I suppose it’s relevant enough for me to try to answer. So. Once upon a time, stuff about autism was generally in the “autism” tag. It didn’t work very well, because much as the autism tag is currently filled with people posting pictures of their siblings and children (often without mentioning that the person is OK with this, which is a problem for a lot of reasons) tagged with autism for no apparent reason, people using an autism tag as an insult for people they don’t like, advertisements for Autism Speaks walks, and people talking about their autistic children and siblings as mysterious. All this is generally very tiresome for autistic people to read and dig through just to find a couple posts by actual autistic people about their own lives. Additionally, when we said things about how the assumption of “mysteriousness” or such othering descriptions were really not cool, if it was tagged “autism,” there would be a pile of angry parents and siblings. Basically, the “autism” tag was really unwelcoming for actual autistic people! It was all other people talking about their autistic relatives, generally in ways that squick autistic people. This is similar to the problems when autistic people tried to organize at conferences about autism run by non-autistic people. They really didn’t like it when autistic people started talking to disagree with them. So another tag started: “actually autistic” or “actuallyautistic.” Both versions of the tag get used, a lot of people use them pretty much interchangeably, a lot of people use one or the other, a lot of people use both on any given relevant post. I don’t know of any pattern relating to who uses which ones, but that doesn’t mean there isn’t one. That tag is meant as “the person posting this is themself autistic.” Not everything on that tag is immediately and obviously autism related, but it’s usually something that the poster thinks is related to their own autism. Sometimes it might be something that an autistic poster wants other autistic people to see, which is a pretty reasonable use of tags. Organization-wise, Autism Women’s Network (AWN) and The Autistic Self Advocacy Network (ASAN) both post there, and Parenting Autistic Children With Love and Acceptance (PACLA) sometimes will if the mod who’s making the post is themself autistic (which might be all the tumblr mods?) Autistics Speaking Day and Autism Positivity flash blogs both post to the tags as well- these are autistic-run flash blogs. Having run the tumblrs for both on occasion, I only tag the autistic-written posts as actuallyautistic, generally. But since I’m autistic and autistic people sharing links to relevant things, autistic-written or not, has been a thing in the tag before, I don’t worry too much about the ones where I’m not actually sure if the writer is autistic or not. Anyways: The short version is that the autism tag was and is an unsafe place for many autistic people because folks didn’t get that autistic people were following and reading and might be capable of having opinions on what we were reading, the actuallyautistic/ actually autistic tags are safer for some autistic people, and thus they exist.”