I recently read an article about certain labels, often used to describe the Autism Spectrum, and why they shouldn’t be used.
I’ve heard so many different ways to describe Autism and Asperger’s. They are all, at best, wrong, and at worst, severely damaging. Some of these labels include, but aren’t limited to: high-functioning, mild autism and autism light, like it’s the diet version of Autism or something equally stupid.
The reason that these are wrong is simple. I have a diagnosis of Asperger’s Syndrome, and I now function pretty well in circumstances where I’m comfortable. Yet if you had met me many years ago, in my youth … when I was at my lowest … I would have been either unable to communicate with you, or had very impaired communication and social interaction. I sometimes exhibited some very bizarre and risky behaviour, I was rarely able to sleep, or was sleeping at the wrong times, and sometimes became very aggressive. I self-medicated with alcohol and prescription and street drugs. Frequent self-injury resulted in my waking up in the resuscitation room of my local hospital on more than one occasion. I’m glad those days seem to be in the past, now.
Yet in more recent years, you would find that, I’m quite sociable and have a very demanding and intense public-facing job, Despite this, I still have great difficulty in communicating effectively and interpreting how or what others are thinking or feeling. I really can struggle badly with facial expressions, body language and social cues. I also struggle to regulate my own emotions, but I’ve learned to channel this into my writing. I really love repetition and routine. I also have a very big love of science, mainly quantum mechanics and geek culture, including going to conventions and interviewing some big names.
Why have I told you all this? Well, if you just looked at or met me when I had the first set of behaviours and symptoms you would probably say I had low-functioning autism. Whereas if you met me today, you would maybe say that I’m a bit eccentric or have a form of high-functioning autism. The fact is that I am me.. the same me as I was then, and I now have a diagnosis of Asperger’s or Autism Spectrum Disorder. That should be sufficient, without putting “functioning” labels on it because as the above proves, it’s a spectrum. As such, we can find ourselves at varying points on the spectrum at certain times in our lives. I am Autistic – that’s it – my functioning level can and always will vary depending on external situations and stimuli.
In short, labels go on food cans, not people.
Stay Safe X
Fantastically expressed. You are spot on.
Thank you for the kind words.
I think the worst metaphor about the spectrum that we have to deal with is that the researchers that first identified our configuration, classified it as a “disorder” for all to come, we are asymmetric not flawed. Many contemporary professionals perpetuate this metaphor and re-skin it every now and then. I think the only way out of this situation is by selectively deconstructing the diagnosis ourselves and bootstrapping our own vernacular that disperses disability. For instance Autistic Spectrum Disorder (ASD) could be Autistic Spectrum Configuration (ASC). I am also ruminating over how to deconstruct “high functioning’ and I’m playing with notions of proximity, such as deep and near. Another idea I’m trying to see if it get’s traction is that individuals on the spectrum have been born into a global diaspora. I invented numerous other neologisms to place distance between the establish professional community and us. Distance is an important word here, I have learned that individuals on the spectrum have to contend with this pervasive shorthand of the Typs, being shunned and passed over, pervasive solitary isolation, and often medicated for their reactions and maladaptations to the inculcation activities of the Typs. Individuals on the spectrum or inordinately sensitive to their environment and they can be swamped by these pressures and compress the subtler aspects of their minds that they can access much better than the Typs. I’ve been participating in a Local Adult Aspie group for almost a decade in Austin and there are many late to actualize they are on this spectrum. Individuals attend for support, respite from the world of the Typs and find socialization and appreciation of a regular group that enjoys each others company beyond commiseration. I’ve been care-taking this group for 5 years now and have started introducing that the members are nucleating from a diaspora and we can take this beyond social and self support. There is a community of substantial “Cognitive Surplus” a that if brought together to bootstrap a brain trust, a prosocial spectrum organization that could help uplift, actualize and realizing a engaging substantially more rewarding and complex life journey for those that find themselves on the spectrum.
This notion of a band of Aspies has been in ideation for years and finally starting to coalesce with the more dignitaries on the spectrum I encounter, earlier the year I had the opportune chance to meet Temple Grandin when she came to Austin. Temple had much wisdom of life on the Spectrum and the most salient part of her talk was that we need to become and remain engaged in life, and that does not mean being entertained with games and media.
Since 2016 I’ve been glacially laying out an organization to do this, I’ve made several unsuccessful attempts to proposals to talk on this idea at SXSW, Autscape, and other organizations, to engage others to help me bootstrap this organization. Each effort increases the resolution of the the organization I’m trying to bring forward. My next foray to locate more individuals in the Autistic Diaspora to participate in this endeavor may be a TEDx event. I’m currently progressing through local social and sustainability accelerator programs to form the organization and demo our capabilities. I currently call this group “The NeuroCollective” and the first technology project is parallel agriculture system for the built environment to ameliorate the risks of relying on conventional monoculture methods of food production that has poor resiliency to the advancing climate change with substantially lowered resource demands. I have less ambitious project to toss out there for others, such as developing a movie script.
I think this type of prosocial collaboration amongst ourselves to bring the Autistic Diaspora together could be the start of something magnificent and fresh. However, I don’t want this to be melded from just my clay.