Celebrating difference: people of determination

For a number of reasons, which would take too long to explain just at the moment, I have recently been researching and learning a lot more about autism in girls, and I have a number of observations.

First, there really is an inequality in how autism is understood in girls when compared to how it is understood in boys. One of the most common frustrations that parents of girls with autism report is how their daughters can easily be dismissed as not being autistic simply because they can look others in the eye and/or demonstrate empathy. Even medical professionals can be guilty of the assumption that ‘eye contact = not autistic’; no wonder vastly fewer girls than boys are diagnosed, if they fall at the first hurdle of referral. A little learning can be a dangerous thing in this respect … a couple of PowerPoint slides at a training day can give people (including, it must be said, teachers) the apparent confidence that they understand autism, but this certainty is most likely misplaced.

Secondly – ‘masking’ (when a child hides her feelings) can appear on the surface (no pun intended, here) to be one of the best things that an autistic child can do, because it allows them to ‘fit in’ and do what is ‘normal’ or ‘expected’, but in the long term (and often even in the short term) it can actually be one of the worst. This is because (a) it means that the uninitiated or unaware (teachers, relatives etc) remain oblivious to the real feelings and perceptions that the autistic child is experiencing; (b) the mask cannot last forever, and at some point these feelings will explode, often with trusted adults at home, who then have to bear the burden of this; and (c) when the masked feelings do emerge in other company, it can lead to utter perplexity and ‘shut down’ responses from the adults around (eg ‘you can’t behave like that’) which further alienate the autistic child. This latter point is particularly exacerbated in responses to girls who have meltdowns because, still, ‘girls aren’t supposed to behave like that’. Sigh.

Thirdly – and this is really important – practically everything I read about autism represents autism as a deficit life situation. I have even seen it described as ‘life-limiting’ or ‘limiting life chances’. Given that we are (finally) coming as a society round to a better expression of tolerance for others in a much, much broader sense, then why are we stuck in a negative rut when it comes to neuro-diverse children (or adults, for that matter) … especially when (to my still relatively untutored eye) it seems as though practically every autistic person I meet or hear about is uniquely special, just as every child is? Creativity, focus, insightfulness, honesty, straightforwardness … take your pick! I sometimes wonder whether the world might actually be a better place if neurodiversity was actually more common than being neurotypical …

As I ponder this, I reckon we still have a long way to go before we can actually dismantle the bastion of fairness and discrimination that has been erected around autism – in girls, especially. This means that in the meantime, autistic children and adults are going to be bearing the brunt of having to work harder to carve out the roles in the world which they deserve.

I recall being in Abu Dhabi earlier this year, at the same time as the Special Olympic Games, which were branded the Games for People of Determination… ‘Meet the Determined’ was the slogan on all the posters. This is part of a wider strategy in the UAE to support difference, and it was incredibly heartening to see signs around that linked a traditional ‘disabled’ wheelchair sign with the concept of determination. How refreshing!!

Somehow we all have to grow up a bit in our understanding of what autism is, and what ‘difference’ means … after all, if we are all different, what is ‘normal’? And if ‘normal’ is so hard to define, why do we keep expecting people to be it? Let us embrace diversity, recognise that different people have different needs, and genuinely help one another to find ways in which we can live together more equally.

And a good start would be to challenge our negative assumptions about autism in girls …

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