Ever heard that saying Life is a journey? I would be surprised if not. It’s said very regularly in many contexts. I believe the reason is that it has a truth to it. Yes, life is a journey, as clichéd as it may sound it is true. It certainly has been for myself, I have journeyed through many different life lessons, lessons steeped in difficulties, lessons steeped in joy, and lessons steeped in trauma.
There have also been lessons steeped in new and fresh understandings. Mostly, these fresh and new understandings have not been easily discovered but have involved lot’s of soul searching and thought and discussions. They have invariably involved periods of hurting others with my words and being hurt by others words. One of those aspects has been that journey from autism as a disorder to autistic as a difference. It is a genuine journey, one that I have embraced. I hard fought and won a journey to a celebrated identity.
In recent days, I have thought about the propensity of autism being labeled as a disorder. I have difficulty with this concept. To me, it is not a disorder but difference. There are many differing ideas about this across ranges of people, autistics, professionals, parents, educators etc. A very common response to objecting to it being called a disorder I hear is the assertion that it is that way in the DSM documentation, so it must be.
But things are not that simple. Things are really more complex and nuanced than that. There are many things that have in the past been labelled as a disorder or illness only to discover that it’s actually just a different expression of what it means to be human.
Humanity is an exceedingly complex thing. To be human is so complex, we are a product of our genetics, our histories, our culture, our capacities for thought amongst other things.
I can’t pretend for a second that I understand everything. I can’t pretend for a second that my life has been an easy journey, it hasn’t. However, I also can’t pretend for a second that I don’t have privilege and operate in a sense from that privileged paradigm. It is important that I acknowledge that privilege before attempting to go further.
I’m white. I’m Male. I’m cismale. I’m heterosexual. I come from a long Christian heritage. These are all aspects of my privilege that come into play. And in light of that, I seek to check that privilege, to understand that what I write is influenced by that privilege and that how I think and understand is influenced by that privilege.
I’m 46 years old. I was born into what looked for all intents and purposes to be a good middle-class Christian family. My grandparents were missionaries and my mother was born on an indigenous mission in the top end of Australia. My grandfather later went on to become a Christian Minister.
I went to school in an environment where in general the idea of equality for LGBTIQ people was not really even on the agenda. Horrible and despicable things were said about LGBTIQ people. In my lack of knowledge and understanding, I was a part of the problem. I partook in some of those conversations too.
My good evangelical Christian heritage did not help me in this regard. From the pulpit, these orientations were commonly proclaimed an aberration to acceptable human expression.
At the age of 19, a close friend came out. Suddenly the aberration of what I believed was tested. Suddenly I was faced with the reality of a very close friend bearing all before me juxtaposed to what I thought based on what I had been told. I entered what could be termed a crisis of conscience.
I vividly recall where I was on that night. I vividly recall the crises of conscience I experienced in that moment. It was painful, uncomfortable and it was a pivotal moment. In that moment, I had to make a choice. I had to make a choice for humanity or the status quo. I chose humanity and began a long journey that took me from discrimination through tolerance to acceptance and on to celebration. It hasn’t been easy but it has been incredible, rewarding and I am much the better person for it.
You may wonder what that story has to do with autism and being autistic. You may wonder why I shared that with you, for what purpose.
I shared it because this journey to acceptance and celebration in terms of LGBTIQ human people has many parallels to the journey that needs to occur with autism and autistics.
Yes, that’s right. That journey is similar.
When I was born in 1970, homosexuality was a disorder listed in the DSM. It was officially removed during the 1970’s in either an update to the DSMII or in the DSMIII. As I grew up the talk, the rhetoric and the reality of homosexuality grew and changed. Laws were changed, rights were granted.
But in the meantime, many were hurt. Shamefully, I am sure I hurt some too in my ignorance. Last year we saw the USA landmark supreme court decision granting marriage equality.
Currently, autism is listed in the DSM as a disorder. Autistic pride is on the rise. We light it up Gold in the face of the pathology focussed light it up blue. We embrace the neurodiversity paradigm, in the face of a media environment that continues with a negative narrative of less not different.
We boldly claim no cure is required. We advocate for acceptance not cure. We speak out against harmful treatments.
In these actions, I see parallels between the actions and advocacy taken by those in the LGBTIQ movements.
It is not the same of course. The issues are different, of course. Yet there are similarities and shared experiences.
I have friends that were subjected to aversion therapies and change therapy programs to “Cure” them from their sexual orientation.
Foundational practices of ABA therapies draw from these processes also, aversions are used and encouraged.
Many non-heterosexuals have developed mental health issues such as severe anxiety, depression and PTSD. Just as many from the autistic community who have been subjected to ABA and similar therapies have developed these conditions also.
There is already a vast number of autistics who have been subjected to hurtful, dangerous and at times abusive treatments to cure them of their so-called disorder.
This has to stop.
I long for the day when we as the autistic communities are able to look back and see the concept of autism as a disorder behind us and celebrate the embracing of the neurodiversity paradigm. A new dawn if you like where difference is not just tolerated but accepted and celebrated. When parents of autistics don’t have to fight for their children to be accommodated and have their sensory needs taken into account.
Until then I for one will continue to proclaim. I am not sick, I am not diseased and I am not disordered. I am autistic. I am different not less. I long for that day to come but I will not be silent.