Leading up to Hallowe'en I'm seeing a proliferation this year of the Blue Pumpkin for Autism meme. Autistic on Wheels has a brilliant rebuttal of it here, including asking readers to check Snopes as it's Simply Not a Thing . No one does it, NO ONE and if they did do it (which they don't) is it really such a fantastic idea to anounce your child's vulnerability to their local neighbourhood? It's not like using a sunflower lanyard where you will be supported by DBS checked staff, it's announcing a vulnerability out in the dark, at night, to strangers. Very different.
Looking deeper I can see two issues - 1. Parents naturally wanting to protect their child against the stares of onlookers and 2. Parents wanting their child to be accepted by the wider community. We are often encouraged by the main stream media to explain our child's difficulties (or our own) in the hope that by doing so people will be more accepting. There is the trope that awareness leads to acceptance. However we do need to ask ourselves how feasible this is when hate crimes against the disabled are rising rapidly as reported here?
So what ARE we supposed to do? Lets have a think first about the issues I outlined above.
1. Parents wanting to protect their children against the stares of onlookers.
Oh I get you on this one - I so, so do. So many times I've not made transitions easy for my kids, not anticipated sensory issues, and a million and one other things resulting in at least one of us having a public, noisy meltdown. It is so HARD. All eyes are on us, my heart rate is up, I'm sweating and someone, somewhere will be looking and sounded disgusted. The hope here is that by wearing a t-shirt that says "Autie not naughty" or handing out cards/leaflets is that people will stop looking, understand and go away. Whilst I totally understand it's HORRIBLE to be the focus of unwanted social attention, let me ask you WHO is more important in that moment your child is having a meltdown? A stranger on the street who MAY listen if they a) know what autism is, b) understand the impact of sensory hell and c) understand that that reaction is not misbehaviour OR is it your child who is so totally overwhelmed that their brain has literally shut down to the point of being unable to do anything else in that moment? Stranger or the tiny being that you created and that is right now totally dependent on you?
Totally your call, but here is Agony Autie describing what a meltdown is and how it feels. Honestly in the two minutes is takes for the onlookers to stride down the street away from you, your child becomes yesterday news, whereas YOU as the centre of your child's world can be doing amazing things to support your child and their unique neurobiology. Useful things include taking deep breaths to steady yourself and them , using any pre-agreed plans such as hugging or stroking , or simply just holding space whilst the pent up adrenalin courses through their veins. By not shaming your child at this critical junction and by teaching them that they are ok, and that they matter - YOU are a PARENT SUPERHERO!!! why trade that for the bored onlookers?
Point number 2.
2. Parents wanting their child to be accepted by the wider community.
Again - totally with you on this one. All we want is to be loved and cherished through out our life. However there is good research that autistic and non-autistic communication is equal but different. There is no one right way to be - read more about it here. If we insist on using only non-autistic social skills then we run the risk of alienating the child not only from themselves but their community. Figures in the US currently state that Autism is diagnosed at 1:59 for boys, whilst girls are still under diagnosed. Rounded up to include girls that would be about 1:30 or even higher - so is being autistic and communicating in an autistic way really such a minority thing that we need to stamp out? Or course, this is very different to having a 5 year old flapping enthusiastically at a neighbour or having a meltdown in the street etc. Does that moment HAVE to be a teachable moment for the whole community though? Or can it be something that's just part of life, part of your life and part of your child's life. Disabled people are expected to live in a goldfish tank experience, people's awkwardness around disability led to Bronwyn Berg spiking her wheelchair handles. If you think that sounds extreme have a read of this and then ask yourself, why does disability have to be so performative? Can't we just get on with it? How would it feel to us to have someone narrating - "Oh she wears that jacket because she only wears brown at this time of year" or other such things as soon as we stepped out the front door? In terms of moderating the surrounding sensory environment so that our child can cope, such a monologue might well be distracting. Does every moment of our life have to be a teachable moment for someone else?
To conclude - go out there, enjoy Halloween (or not, the choice is yours). It's ok for you as a parent to have autonomy form the rest of the world - it does not need to know the exact details of your life, or your child's diagnosis or anything else. It will cope, I promise. And so will you.