This is possibly the week of my 15 minutes of fame, thanks to my ‘I Stand Quietly’ poem/open letter for autism awareness that I posted on this blog about 6 months ago. It’s time to move on from #istandquietly. Please help me trend on my new hashtag #popcornbum
Last night was the JustGiving Awards 2015 where I was a finalist for Creative Fundraiser of the Year. (I lost, I’m not upset, I was overwhelmed to even get nominated, let alone be one of the three finalists, the worthy winner was über cool).
And I selfied with Superman, all good.
Tonight I’m having drinks at the National Autistic Society listening to Steve Silberman (author of a new book called Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently
) in conversation with digital artist, poet and synesthete Jon Adams, who has Aspergers syndrome. As if that wasn’t enough of an amazing opportunity for anyone, there’s a small chance that Alan the autistic gardener will be there…
*suppresses another wave of shallow celebrity-related squeals*
Part of my ongoing angst about ‘I Stand Quietly’ is that (for all the good it has done), it is essentially focussing on the negatives of autism, useful in some ways but not, I believe, going to benefit autism rights in the long run.
Forgive my developing ego, I’ve been thinking that this week’s publicity may bring a few new visitors to my blog and knowing they are unlikely to read extensively, I’ve been wondering what to “headline” with as my preferred one-shot message about autism.
I would rather you forget my poem’s images of my daughter in distress, in sensory meltdown and instead (not in a weird way) imagine a little bit of popcorn nestled in her lovely, squidgy, slightly dimpled bum.
The popcorn was not in her bum cleavage per se: daughter and I share a little-celebrated genetic trait that, in our family, is fondly known as a “money pocket”. The correct medical name is a sacral dimple and as far as I was concerned growing up, it was simply for storing 10p for emergency phone calls.
Sacral dimples are found in about 2-4% of bottoms and are generally harmless. They can be shallow or deep and at their worst, an open hole, possibly leading to an unclosed neural tube that can indicate spina bifida, but this is extremely rare.
Not that I knew much of that before a quick Google whilst prepping this blog post.
By the time I was reaching my pre-teens, my “money pocket” was a non-subject; forgotten partly as body-related conversations went moodily, hormonally off-topic, mainly because it is really not significant. It might have crossed my mind a couple of times as to why I was different but once mobile phones were invented, I didn’t need that 10p and it had no obvious other use so I didn’t have cause to think about it any more.
It was rediscovered by my husband, ahem, and then quickly forgotten again until daughter was born. Whilst poring over every gorgeous inch of her lovely marshmallowy-soft baby body, we discovered she had inherited a money pocket.
I can’t even really remember what I thought about that; mild amusement maybe, I certainly wasn’t worried about it.
I felt no more or less fascination than with any other little bit of her, from the 10 tiny fingers to the 10 tiny toes, my eyes…
And the girly rosebud version of her Daddy’s lips that, of late, are extra pouty and reddened: permanently enhanced by the results of being “salt-cured” as daughter is currently addicted to salty popcorn, with stealth-added extra salt if she can get manage to sneak it.
If she had her way, salt-laden popcorn would be served to her for every meal, preferably whilst tucked up in our bed. Husband is very very fed up with finding popcorn debris in the bed.
This is how a small chunk ended up being stored in her
money now-renamed popcorn pocket – saved for later, in case of emergency, I suggested – she thought this was completely hilarious. I am still completely baffled by how someone with the most acute sensory sensitivity of ANYONE I know cannot feel that they have a piece of popcorn in their bum.
When googling about sacral dimples, I came across a forum where a new mother was seeking advice on plastic surgery to correct her newborn’s (already confirmed as harmless) dimple. She was clearly distressed and somewhat disgusted. Her child’s sacral dimple was something that needed to be treated, eradicated.
She was also in a guilty emotional turmoil, questioning what she had done during her pregnancy to cause the defect, lamenting a couple of glasses of wine and some painkillers.
It read as crazy.
Barking at moving vehicles, believing in leprechauns, “OMFG are you actually responsible for a newborn?” type of crazy.
How could the woman be so ignorant? How could she feel that way?
But then I realised she was just at the very (very, very) far uneducated end of a continuum: the panicked mum, ignorant of what this new unexpected thing really means, disappointed that it wasn’t all textbook perfect. I’d been there too.
When it was confirmed that my daughter was autistic, I cried. Grief, relief, I’m still not sure how much of each, and then I took it on. I read tons of books and websites, I met with the lovely lady from the National Autistic Society, I visited autism parents’ forums and joined autism parents’ Facebook groups…
In that initial “I can fix this” flurry, never once did I seek support or guidance directly from someone autistic. With hindsight, it was because I knew little of autism, and so I was scared; and through that fear, unwittingly and unintentionally prejudiced.
Hubby and I (briefly) questioned our decision to give daughter the MMR jab. We reminded each other of how she had a terrible traumatic birth, we recalled my difficult pregnancy and I soul-searched about how I’d had a couple of glasses of wine and a shameful sushi binge.
How could I be so ignorant? How could I feel that way?
More recently, the things I’ve learned about autism, I have learned from autistic people, including my daughter. Now I completely understand that we are simply dealing with neurodiversity, a natural variation; no reason to weep, nothing more shocking than inheriting a sacral dimple, or my eyes.
OK, that neuro-difference does come with some challenges. OK, daughter needs a lot of help and support in certain areas of her life, maybe she always will. OK, she has benefitted from certain types of therapy.
Her autism, however, can’t and doesn’t need to be “treated”, let alone eradicated.
Although inarticulately, I have been saying to people for some time that I believe that autism is set to be the next big rights movement: gender, race, sexuality, neurodiversity. Steve Silberman’s book, Neurotribes, contextualises and justifies this.
I don’t expect anyone untouched by autism to read Neurotribes in full but I would ask you to take 5 minutes to read Silberman’s interview with Salon magazine for an idea of how wrong we had it and the scale of change I hope we are going to be dealing with.
I am excited and proud to be present at, and hopefully part of, what I hope is the start of a paradigm shift in how autism is viewed and appreciated, thanks in part to Silberman’s book.
I’m not saying it’s the best ever book about autism, to be honest, I’ve not finished reading it yet (blush) but I’m excited by how it’s created a wave for us to catch: along with Alan (the autistic) gardener and others, autism might be becoming a “thing” and we really need to capitalise on that.
In continuing hysterical fangirl mode, I am going to ask Silberman to sign my copy of Neurotribes tonight. To be very honest, I’m significantly more excited about that than last night’s selfie with Superman. No offence Henry, sweetheart.
I’m then going to keep his book in a safe place, as a promise to my daughter. My plan is to give it to her in just over 10 years time, on her 18th birthday…
First and foremost, I am a mother and my time must be devoted to my daughter’s development and needs (autism-related or not). That doesn’t leave me much free time, but after last night’s awards, I feel inspired, reinvigorated and even more committed to spending that time campaigning for autism rights, writing and sharing this blog.
Ten years probably isn’t enough time to achieve all the societal changes I dream for but hopefully we’ll have made significant steps, significant enough for her to come of age in a world that views her as equal, accepts and supports her to be able to achieve her full potential, sees her as special for her contributions not her needs.
My ambition is that on daughter’s 18th birthday her biggest fear is not how she will be treated in the world because she has autism, it will be whether she will be recognised as the young lady whose mum once blogged about the popcorn up her bum.
So, if you’ve made it this far, I’m asking again please – I would appreciate a ‘Like’ or a ‘Share’, let’s move on from #istandquietly – see if you can help me trend on my new hashtag #popcornbum