Part of the “nothing about us without us movement”

From a discussion on one of the forums I attend. Somebody was confused about the tag “actually autistic” and I thought I’d try to clarify the origins of the tag and the intent behind it.

Several years ago it became evident that autistic individuals had very little voice /participation or input over studies being done, results being published in papers and stated/accepted as facts, etc.

The world of active outspoken support for the handicapped population had generated the phrase “nothing about us without us” to protest and point out that handicapped people were not consulted or informed about decisions made in medical and governmental (and social contexts too) regarding supports, research, etc.


Autistic people began to speak up using that phrase. ( nothing about us without us) At this point autism awareness was growing and the autistic neurodivergence movement was forming. From the clinical medical viewpoint of autism being a defect that needed a cure to one of acceptance and support for those of us who differed from the majority in the way we function. “Actually autistic” became a way to show we were speaking up for ourselves and that parents, scientists, teachers, therapists, and the whole world of neurotypical individuals whose voices had dominated the information sought and provided, the support from the government, the rules and regulations and other aspects of our lives.

Instead autistic individuals began participating in these decisions and declaring our autism loudly to those who talked over us and thought they knew what was best for us without actually knowing or understanding much about autism from the autistic point of view.
Autistic people are not using “actually autistic” to differentiate between self identified autistic individuals or declare themselves superior, it is a call to be heard as individuals in discussions about our issues, our status, our treatment (both social and medical), the research that is being done , the often mistaken ideas perpetuated about those of us who are “actually autistic” .

I have not used the phrase, although I gladly participated in interviews with the administrator/ of a page with that name. Actually autistic voices must be heard and valued for the information and insights we can provide. “Actually autistic” used in communication simply identifies us as our selves and shows that we too have perspectives, insights, and experiences that must be included in anything done “on our behalf” or “for our own good” .

Keep speaking out and identifying yourself as “actually autistic” with or without using that tag.

We are being heard and little by little the full range of autism from those with the most struggles to the “highest functioning”. There is no clear dividing line between us, many gifted people struggle every day with overwhelm and dysfunction in parts of their lives too.

Speaking up for those who cannot communicate for themselves is so important when major decisions about care, support, aid, education, etc are being made today. I am “actually autistic” even though I do not have that tag on all my communications.