Common themes abound on the internet. Social media threads abound with multiple stories on the same topic. Media outlets duplicate the same stories with tweaks and changes. The screen media news each night runs the same sort of stories over and again.
As an autistic blogger, when I look back on the topics I have written on there are a bunch of themes that repeat themselves. It seems again and again these issues gain currency in the autistic and wider autism communities.
The thing is, these topics shouldn’t really need to be harped on, repeated, rehashed and re-emphasised again and again. They are just basic things that are well established and should be just a given. If they were we would be able to move on to far more pertinent issues like focusing on real accommodations for autistic across the lifespan, strategies to support autistics to achieve their hopes and dreams rather than minimise those hopes and dreams. Perhaps there could be a focus on the absolute lack of support services and advocacy for autistic adults, the blocks and barriers to adults accessing diagnostic services at reasonable cost. Dare I say, we could even try to work on the lack of workplace participation for autistic persons, that is at severely low rates even within the disabled communities at large.
I long for the day when scrolling through social media feeds, autistic groups etc will not mean I am flooded with posts needing to call for Acceptance, the importance of language, the debunking of the vaccine causes autism myth, the need to highlight that autism is difference not disease and explanations of the spectrum as more complex than a line from severe to mild.
Let’s get to it.
With the major autism groups worldwide promoting autism awareness, especially through April each year, it remains a thing that acceptance needs to be portrayed as a counterpoint to this message.
There has been some positive moves here with the United Nations this year focusing on neurodiversity. This is a step in the right direction. Yet still the need to counterpoint remains. April 2 is still called world autism awareness day. This in itself is an issue.
Myriad of parent groups continue to declare they are “raising awareness” in their Facebook groups, with their t-shirts, with their blue lightbulbs and puzzle pieces. The false message of awareness is insidious and is counterproductive to real acceptance.
Within society awareness is overall a negative. When we are called to being aware, or to raise awareness it is most commonly associated with something negative. This is an antitheses to acceptance.
Road signs tell us to be aware of danger.
Our sources of news call us to be aware of criminals, predators etc.
We learn to be aware of danger and hazard. We don’t want to accept these things, and rightly so. Overall the message of awareness is about something that is to be eradicated or mitigated not something to be accepted.
One argument often cited is that we must be aware before we can accept. The problem is that the whole focus of awareness is about not being subjected to that thing. It’s a false argument. One does not need to be aware that a person happens to be LGBTIQ to accept that person. One accepts a person because they are human.
Autism acceptance is about that. Accepting a person as a human person. The fact that they are autistic is just a part of who they are, it is not something to be aware of. It is something that within an attitude of acceptance, learning who that person is, and how they exist and function in the world can take place. But awareness is not a pre-requisite of that.
The issue of language comes up again and again. The most common factor in this realm is the question of Identity-first or Person-first language.
Identity-First language simply is embracing the integral aspect of being autistic. It is acknowledging how intertwined that is to oneself and in a sense, celebrating that one’s brain is wired that way. It is characterised in a person referring to themselves and others as autistic and not person with autism.
Person-First language on the other hand simply refers to the person as a person with autism rather than as an autistic person. This is common place within the disability realm, it is how we refer to people with illnesses such a person with cancer.
Person first language is rooted in an ideal that the person be seen before the disease, disability, diagnoses etc. However the reality is, if one needs to refer to a person with (insert issue here) then one is not really seeing the person first after all.
In relation to autism, the majority of autistic people reject person-first language and prefer Identity first language. This then should be a moot point. But it’s not, as an autistic person I find myself regularly corrected by people demanding I refer to myself as a person with autism.
Therapists, support workers, clinicians, doctors and authors regularly use Person-First language. Often in the face of requests by the autistic individuals to which they refer not to do so.
As an autistic I know that autism is hard-wired into who I am. Therefore I am an autistic person, just as I am left-handed and not a person with left-handedness. I am a father not a person with fatherness.
The very fact that this topic continues to need to be addressed is an indictment on our society. Few things have been more well established than the fact that vaccines to not cause autism.
Unfortunately, celebrities and politicians continue to further this myth. Films are produced that are high on myth, innuendo and conspiracy but low on fact, evidence and actual verifiable data that continue to push this narrative along.
It’s a simple fact, autism is not caused by vaccines. There is no such thing as autism by vaccine injury.
Let’s just move on from this bullshit and talk about support and services instead of bogus causes that prop up the conspiracy theory industry.
Difference not disease…
Different Not Less. It’s really that simple. We autistics are different, we not diseased and we are certainly not less.
When you think about this it is pretty clear. A disease is a thing that we catch, a thing that against our systems, it infects us, it attacks us, it attempts to diminish us.
Autism is non of these things. It is a neurological difference. A difference in the way the brain functions.
Not too many years ago homosesuality was considered a disease and even listed as a disorder in the DSM. Few think that way now.
It is my hope that in time few will think of autism in this way too.
Again though this is a thing that we seem to have to keep harping on but shouldn’t have to. It is a thing that we should be moving on to in preference to issues that will impact the lives of autistic people in positive and life affirming ways.
The spectrum is not a linear measuring device…
Ah, the spectrum, it’s almost a catch all phrase. It’s used often to catch all of humanity into a linear concept from mild or almost non-existent to severe and debilitating at the other. This is a falsity. It gives rise to such statements as “everybody’s a little bit autistic”.
This is not helpful at all to those that are in fact autistic.
The term spectrum came into play in an update on the DSM, it was employed to broaden the understanding of autism. Prior to this many who are autistic were unable to be diagnosed due to the strict criteria. The idea of the spectrum allowed diagnosticians to see a range of behaviours within the critieria. Initially the term continuum was floated.
The thing is though this spectrum is not and never was intended to place an autistic person in a static position on an imaginary line.
There are no ends of the spectrum. There are infinite possibilities and those possibilities change given the circumstances involved. In one day on one occassion I as an autistic may function very well and another not so well, yet in another situation that may be reversed. Indeed, that same situation on a different occassion could very result in me functioning very poorly.
Just like all human persons, we all function differently in different situations at different times.
The problem with spectrum as I see it is that the idea of a linear line is a tool that attempts to place an autistic person in a box. By placing that person in that box, a set of preconceived notions of what may or may not be needed to support them is applied to them.
Far better would be, in my view, to acknowledge that a person is autistic and then spend the time and resources to get to know that person well enough to establish helpful and appropriate strategies to support them.
A final word…
I know we will keep speaking on these issues because we will most likely have to. But surely it’s time to move on and focus on the issues that will actually help and assist actually autistic people to thrive in the world.
Perhaps it’s time to move on from arguing about issues that are not actually about autistic living and thriving and about making parents and professionals feel better about their autistic family members and clients.
But in the meantime, we will I guess, continue to talk about these things, as they are imperative in shifting the narrative of autism as a negative to autism as just a different way of being human.