Negotiating life as a human is complex stuff, I think it’s safe to say this is true for everyone. Human relationships are messy. They are filled with all manner of joys and sadness, wins and losses, good times and hard times. This is just the nature of it all. You can’t win them all they say. You can’t get it right all the time. A good amount of give and take is needed from all parties in a relationship to make them work.
Negotiating life as an Âûtistic has extra layers of complexity. Not necessarily more difficult but certainly some different layers. There are those familiar traits that are talked about often, the propensity to be literal, the propensity to say it as you see it, communication difficulties. All that stuff adds extra complexity for the Âûtistic to negotiate. This can be really hard stuff, and when you add in the sense of politically correct speech this can be really hard for anyone to get right in the right situations let alone an Âûtistic person that finds it challenging and difficult to read the non-verbal communication that goes on in all social exchanges.
There’s no doubt about it. It’s really bloody hard to get it right.
I get it wrong lots of times. I offend people without meaning to. I upset people when I don’t want to. I damage relationships when they shouldn’t need to be damaged.
So I want to put it out there that sometimes this political correct speech stuff needs to be, I don’t know, maybe just not taken so seriously.
There are absolutely things that should never be forgotten, and never be seen as okay. For example the use of the “R” word and the “N” word. There’s just never a time when that is a reasonable word to use to describe another human person, it’s just never right.
I found myself in a situation recently where no matter what I tried to say it was wrong. I made a comment that was rushed and not thought through, it was mistakenly taken in a way that it was not intended to be, and however I tried to rectify it was just impossible to get it right. Part of the problem for me in some respects was not actually having the right terminology to apply that would not automatically cause offence because it was politically incorrect. It was a sad and frustrating situation. But we do need to realise that sometimes the wrong terminology does not mean that offence is intended or should be taken.
It’s a fine line and there will always be times we get it wrong. That’s life I guess. Not much we can do to change that.
I think what I am trying to get at here is there are times where quibbling over a term is important and time when it isn’t worth it. The relationship between the humans involved surely needs to be the tantamount thing, and the knowledge of the intent and the heart of the person being engaged with, when there is an ongoing relationship, should be the primary concern surely.
To turn our attention now on an issue that is important when it comes to quibbling over language, and that issue is the language of disease and disorder in regard to Âûtism. The official language is Âûtism Spectrum Disorder. This is the terminology of the DSM5, the “Bible” of psychology and psychiatry when it comes to diagnosing people. The problem with this terminology is it denotes a deficit, it denotes a sense of less than desirable, or less than “normal” whatever normal actually is anyway.
Simon Baron-Cohen has suggested that the terminology of Autism Spectrum Condition would be a preferable use of language, as it does not have the same automatic connotation of lessor that the Disorder language does. Perhaps a case in point here is that as we understand humanity more and more we do adapt our language with our adapting understanding of the human condition. For example until 1980 the DSM in it’s earlier iterations listed a disorder called Homosexuality Disorder. Rightly we now discard as offensive and wrong the idea that homosexual people are disordered people.
So too must we reject the language of disorder when it comes to Âûtism. The vast majority of scientific and psychological thought on the issue of autism, once the conspiracy theorists and the vaccination as the cause, nincompoops are ignored, is in agreement that Âûtism is a neurological difference, not a deficit but a difference. This is a case where we aren’t talking about kindergarten political correctness, but highlighting a real point of difference.
Think for a moment about the difference between “has autism” and “Autistic” for example. If I say I have autism it automatically leads towards thinking of something one has, something that has been caught or something that can be cured. Whereas, the word Âûtistic leans more towards a state of being, an intricately intertwined and inseparable part of the person.
It has been said that we shouldn’t quibble over the language of disorder, disease or condition in regard to Âûtism. I disagree with this contention wholeheartedly. It is incredibly important. It is a point of difference that simply should not be put aside and ignored. It’s not about political correctness at all, it’s far more important than that. It is so important that the very safety of Âûtistic children is at stake.
Over the last decade in particular we have seen the language of disorder a prevalent narrative amongst the Autism peak bodies like Autism Speaks and generally in the media. It is precisely this narrative, which often includes such emotive terms as catastrophe, epidemic and even holocaust, that creates a sense in the parents of autistic children of devastation and loss.
This sense of devastation and loss is what has enabled the snake oil and poison sellers, and the unscrupulous practitioners and clinicians that prey on this devastation to sell their evil wares, and try their abusive treatments. Those Like Kerri Rivera, Amanda Mary, Jeff Bradstreet and Andrew Wakefield.
So no it’s not quibbling over language, it’s a bloody critical point of difference.