The A word

This month is autism awareness month. I know it seems that every single day is taken up by some awareness raising cause, but this is something that really doesn't get the societal spotlight it deserves. Let me explain. 352,197 people in 2013 were diagnosed with cancer. That's about 1 incidence of cancer for every 182 people. And we've all heard of cancer. Money is spent on educating, awareness raising, researching, preventing. You name it, it's probably being done, and absolutely rightly so. Cancer is a cruel and indiscriminate disease which continues to destroy lives daily. 

Now before you get your knickers in a twist about the slightly controversial link I just made, let me be clear. I DO NOT think autism is a medical disease in the same way as cancer. It's not primarily physical and it can't be cured with conventional medicine. It's not something to be devastated about and it certainly isn't a killer. My point was merely this. Autism spectrum disorder currently affects approximately 1 in 68 people, over three times as many people as cancer. And yet autism is repeatedly treated like the dirty little secret no one wants to address; sidelined by society because it's still not absolutely clear what exactly we're talking about.  

If you'd have asked me nine years ago what autism was, I might have mumbled something about Rainman under my breath and moved the conversation swiftly on. I could have told you every little detail about bi-polar disorder from a painfully personal perspective; the intimate decor of the local psychiatric ward, the benefits and side effects of various antidepressant and antipsychotic meds, the ins and outs of when an overdose needed medical attention and how to change dressings on self-inflicted wounds. Why? That was my experience. That's what I knew about because that's what I lived with. But autism? No clue. That conversation would have been punctuated by a probably long and definitely awkward tumbleweed moment. I used to work as a teaching assistant in a high school supporting kids with emotional and behavioural difficulties, and I remember how much admiration I had for my colleagues working with the SEN kids. I distinctly remember thinking how I could never do that - I just didn't 'get it.'

Fast forward a few years and here I am, a fierce advocate for the autism community. More specifically, I've become a semi-professional squeaky wheel and local authority pain in the arse for my very own B, who has multiple diagnoses including 'severe autism spectrum disorder.' I don't really get the severe part, if you're on the spectrum then you're on the spectrum and every individual will have their own challenges to face as part of that journey. I think they mean 'low functioning' which is a label I have come to absolutely hate, but which paradoxically is a label that often gets B the support he needs. I can't speak for every one of those 1 in 68 people, but I can speak from my personal experience of autism. And, being honest, it's a whole mixed bag of crazy. 

I've been following the current BBC1 drama 'The A-word' with interest, and it's brought back into sharp focus some of those older memories that had started to soften around the edges.  One particular scene this week had me in tears- a heated and brutal exchange between the parents of Joe, a newly diagnosed 5 year old. Alison has just pulled Joe out of school in an attempt to exert some control over her new-found chaos and protect her baby from the outside world. Paul is desperately trying to do the right thing, with no real idea of what that is. 

Alison: "This is about Joe, it's not about me...."

Paul: "Is it? Is it really? Do you know why I think you took him out of school?"

Alison: "Because I love him...and I don't want him to be a condition."

Paul: "It's because you don't want anyone to know, because you are ashamed."

Alison: "You think I'm ashamed? Of my own son?"

Paul: "Of Joe. Of yourself, for not spotting it sooner. Of us, for having him. Of me. And finally, just to round things off, you're ashamed for being ashamed in the first place."

Suckerpunch, right there. That scene was absolutely on point, and captured in one dialogue the constant emotional conflict of having a child who is different. By the time B got an ASD diagnosis at 26 months (which is early for the UK), I had already figured it out myself and it came as no surprise. He ticked every single early warning flag listed on the National Autistic Society website, and I had been dealing with such extreme behaviours for such a long time that the diagnosis was actually quite a relief. But the emotions were the same. I felt like I'd lost a child. And then I felt bad for feeling that way because my child was right there in front of me. I was angry at myself for being so fucking pathetic, for apparently flouting my own unwritten rules about having no expectations for my kids. However much I thought I had this open heart and mindset of allowing them to be exactly who they were, without any limitations or conditions from me, here I was wallowing in the fact that my kid was never going to be any of those things I never expected.  

Now you have to understand, autism is one of many diagnoses B has, and it's pretty impossible to know where one thing starts and another finishes. B's autism is fairly classic, and he sits on the lower functioning (hate that term) end of the spectrum. Currently he has no words. He is a big sensory seeker, meaning if we are not on hand to constantly provide him with safe sensory input, he'll seek it out entirely inappropriately with no regard for his wellbeing. It can be pretty funny. He loves water, so I've often had to scoop him up and move him along when he's dropped to his knees and stuck his face in a puddle. He notices the weirdest things, like the buzzing of the little uplights in supermarket freezers (again, faceplants them, drools all over the fishfingers -my apologies world). He flaps his hands when he's excited, which is cute until he deals you an accidental backhander to the face. He used to stick his hand down his throat to make himself gag, which gave him great sensory feedback but wasn't all that convenient in Tesco with horrified fellow shoppers looking on. B also has huge issues touching certain things. For two years one of his IEP targets has been to tolerate holding a mark making tool. We still haven't ticked that one off the list. For whatever reason, touching things is hard - holding hands is not a favourite, and even just looking at sand or rice in nursery play used to make him physically sick. Because B is a big sensory seeker, anything extreme really floats his boat. He LOVES fairground and theme park rides, the bigger the better, and I think last summer we spent approximately half of our waking hours on the Pirate Ship over at Adventure Wonderland. Thankfully we have an awesome team of carers who love the fact they get paid to take B on crazy rides, so we personally only threw up a handful of times...! 

While we put a sweet little spin on most of his eccentricities, as parents and advocates this shit does get tiring. His lack of regular communication means we have to constantly be tuned in to Radio B. If we're slightly off and things get fuzzy, all hell called and they're waiting just around the corner. I've contemplated wearing a low cut top with 'SORRY" plastered across it for the times we go out somewhere public and I'm constantly apologising for B's complete lack of social functioning. He loves running into people, especially larger, softer people, presumably for the wibbly wobbly sensory feedback it gives him. He also obsesses over babies and isn't always that respectful of their personal space, often trying to climb into their prams. I figured if I wore the aforementioned 'sorry' top people might be distracted enough by my boobs (they're pretty good boobs) while reading the apology to avoid a nasty sweary confrontation. It's usually me being sweary. Under my breath. Whilst trying not to cry. Thankfully B attends an amazing school with speech and language therapy on site, a great medical team and teaching staff who are second to none. So that's one less battle we need to fight. Respite and family support is a whole other thing, and way too much to get into at the end of a blog. But all these things pale into insignificance when he finally learns how to step into his trousers, or brings us a PECS card to ask for something, or, like this morning, hands me the bread and then tries to put it in the toaster to show me he wants toast. That stuff is freakin' awesome. 

So what am I trying to get across? I don't know really. I guess, for my little bit of awareness raising, I'll finish with a plea. Please don't judge- autism is so far off everyone's radar that meltdowns can look like brattish behaviour, and weird little oddities do appear awkward. I get that. But hold off the judging and love our quirky kids. Include us. Teach your kids manners but educate them that a person's worth is not defined by how well they can function in a social setting. Bear your discomfort just long enough to let our amazing kids teach you something back. Gold panning takes time and patience, and I'm still there, out of my depth in cold water and painfully sifting through rocks. But those little flakes of gold are so worth it. 

There's a whole bunch of words that begin with an A,
Annoying alarm, actor, aunt and ashtray.
For me all those a-words have nothing on one,
It starts with an A and ends with my son.


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