You just don’t understand ‘Autism’!

“People don’t understand Autism, they have this preconceived idea of what it is, and it’s not that at all”.

This is a comment which I’ve frequently read, coming from a mother who identifies as being autistic (her choice of words), and who has autistic children. Their lives might look slightly different to what we would expect – there are differences in perception, in the way the world is viewed, in the way that issues are dealt with. This mother just wants the world to (rightly) accept her children as they are, and to enable them to be themselves in their expression and participation in the world around them. She doesn’t want ‘Autism’ to mean anything other than that.

“People don’t understand Autism, they have this preconceived idea of what it is, and it’s not that at all”.

This is a comment which I’ve frequently read, coming from an exhausted mother, who has at least one autistic child. Her child is non-verbal, aggressive, self-harming, incontinent, smears feces for pleasure, and does not sleep for more than four hours at a time. His behaviours and high needs have led to the mother (who is now a single parent) having no friends, no income other than Social Security, and no break from her child. This mother wants the world to know (rightly) how hard it is to care for children like her son, and that it is something that requires community support financially and otherwise. She doesn’t want ‘Autism’ to mean anything other than that.

Who is right? Is it really a matter of Black or White? Is Autism really a spectrum, with such extreme differences inwardly and outwardly?

I’m seriously thinking of starting a petition. A petition that will be sent to members of the medical profession all over the world, asking them to make a huge change, to allow a paradigm shift, to re-examine “evidence” and “the way it’s always been done”. And of course that’s exactly why there’s no point in sending that petition – because the medical profession has a long history of not being open minded, of not only wearing their own blinkers but insisting that everybody else wear them, too.

It seems to me, however, that there are a lot of people unhappy with the word ‘Autism’, and many are also unhappy with the word ‘Spectrum’. My personal opinion is that if you’re naming a condition that resembles ‘normality’ (whatever that may be) at one end, and complete helplessness at the other end, what’s the point of giving it a name? If you have people whose only difference is a flair for the creative, or a unique talent that gives them joy, or simply a different way of thinking about things, do they really need a label? How can that same label then be applied to someone who is in constant danger if not supervised, who will require 24 hour care and support for the rest of their lives, and is unable to engage in the community without extreme assistance?

Can we just take a look at the variety of issues that people are presenting with, and examine them from a new angle? A view that takes into account genetics, environmental factors, medical conditions, abilities as well as disabilities, and most importantly, the impact on the person themselves? Then use the resultant information to provide help and assistance to those who really need it but aren’t getting it, and stop trying to thrust it on those who don’t?

Maybe then we can stop arguing about Autism and Neurodiversity, ability and disability.

Because both points of view exist, and both points of view are right.

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