spoiler alert: see the child before the autism
I’ve experienced an array of reactions when I explain to people that my son’s autistic – and these aren’t just random people; it could be a school mum I speak to or a family friend. Sometimes you can see their faces glaze over and their brains whirring away as they think “what do I say to that?”, “how do I acknowledge what she’s saying without making it look like pity?”, “how do I interact with her son when I have no real idea what autism is?” and there are plenty more captions I could place to the expressions I receive.
The good thing is that – and you’ll see this from the questions – they’re all coming from a place of wanting to understand and be supportive. But sadly, sometimes we get so caught up in the quagmire of what we should and shouldn’t do that often we do nothing. Perhaps that’s from a place of fear; fear of being seen as ignorant; fear of offending someone; fear of accidentally saying something that might make you seem like you’re anti-disabled people – who knows? That’s one for another blog.
But I honestly believe that if people worried less about how something might be perceived and instead, just asked what they were thinking, we’d all understand each other much better instead of constantly trying to interpret what someone’s lack of reaction or muteness might have meant. It’s not only psychologically wearing but we end up creating stories and reaching conclusions in our head about people that simply may not be true. And we’ll remember those stories the next time we see them which will play out in our interaction with them – and so there’s this whole psychological warfare thing going on when people truly only want to be on the same side.
Recently a friend told me her son had muscle tone issues; I’d heard of Duchenne and Muscular Dystrophy but to be honest I still couldn’t tell you much about either condition. So I asked: “sorry, but I don’t really know much about this condition, what is it and how does it affect James on a day to day basis?”.
No-one knows everything and even if you do know some things about certain conditions, unless you ask you won’t know how it affects the child you’re discussing or their parents for that matter. So, stop wondering and just ask. Whenever anyone’s asked me about my son’s autism, I’ve never passed judgement even when they described him as learning disabled or even just referred to him as naughty; at least if people say what they’re thinking it opens the way for me to correct them and explain that he experiences the world differently to you and I or whilst it seems that he’s not listening to me (he generally avoids eye contact when you talk to him so it can look like he’s not paying attention), in fact, he’s absorbing my instructions and processing them – and he’ll respond after a short delay.
“The characteristics of autism vary from one person to another, but in order for a diagnosis to be made, a person will usually be assessed as having, along with other issues, persistent and significant difficulties with social interaction and social communication.” National Autistic Society
So, I thought I’d offer some tips for when you meet my son. If you have an autistic child or know one, these may resonate with you. However, equally, because autism is a spectrum condition your reality might be so different to mine that my tips feel alien. Either way, I hope there’s some light which you can glean from these.
#1. No open questions: When you come over and want to play with my son, don’t ask him what he wants to do – open questions like this are overwhelming and he’ll end up opening lots of things and flitting around for an hour trying to find the perfect activity. Instead, boldly suggest something , i.e. shall we do a puzzle together? There are only two possible answers to this which creates less confusion and so in turn, less anxiety which means he’ll be more focused and will engage with you.
#2. Be honest: If you politely say “why don’t you come over for a playdate?” he’ll ask you for the date, time, duration and what he’ll do there. He is very literal so whilst you think you’re being polite and making conversation, he’s actually making plans so be prepared to honour them or just don’t say something you don’t mean. The same applies to the language you use; colloquialisms or phrases only serve to create confusion in the literal minded – I once made the mistake of saying it was “raining cats and dogs” and it utterly petrified him.
#3. Avoid games where there are winners and losers: games such as Snakes and Ladders are kept out of sight and reach in our home because when my son loses, he loses hard – it can be literally devastating for him. In his mind, if he’s lost a game, it’s as if he’s lost at life. Melodramatic, yes. But very much true.
Instead opt for collaborative, team based games such as Articulate, Charades, or Pictionary. With these, I often manipulate the time, giving him 90 seconds instead of 30 because if he has slightly more time, he’ll answer more questions and get to the finish line sooner. Before I get bashed by the honourable parenting brigade about not teaching my son to be a graceful loser, remember that he requires more support with social integration and interaction than a neurotypical child who gets social cues and the like; mixing with others doesn’t come naturally to my son and he’s much happier in his own company. So if tweaking the timer means he plays with others on a focused goal and can experience being a team player, well that’s what I’m prepared to do. I know this won’t work forever but for now, I can get away with it.
With everything I’ve experienced so far on my autism parenting journey I can say that I’m constantly learning and adapting – there are ‘eureka’ moments when you’ve cracked something but they pass swiftly and are replaced with new situations and challenges. So I’m going to maximise on this one whilst it lasts.
#4. Don’t expect an equal partnership: My son’s dominant in his play with others. He’ll play alongside you if you’re Lego building but not with you – not in an integrated way like children who role play mummies and daddies, engage with each other and jointly enact a situation (i.e. mummy converses with daddy and makes a plan to go to the shops whilst he cooks dinner).
My son requires play to be more structured – no surprises or reactive situations – and the only time this sort of simulation has ever worked is where he plays a restauranteur/chef where you’re the customer and he tells you the menu and what you’ll eat (you can’t choose). He’ll clear the dishes when he’s ready even if you’re mid-sandwich and outstretch his hand for payment of plastic coins. It’s all on his terms. You might get a pudding but it depends on whether he’s in the mood to keep playing or not.
Oh, and you might be required to dress up according to the customer he wishes to serve that day. So, confidently don the top hat, monacle and clip on giraffe’s tail and pretend you’re at an after dark tea party at the zoo.
#5. Cast aside your inhibitions: My son is flamboyant and doesn’t feel nervous about performing in public; in fact, he struggles to identify and label this emotion (and most others). And he thinks that everyone is just like him. He’s an exuberant showman so be prepared to be enlisted into an impromptu show – obviously he’ll be the main event but you’ll get a small role as a (non-speaking) extra and be told what to do. Warning: will probably involve Hawaiian dress up, chorus singing and dancing.
#6. Don’t be offended: I’m very careful about where I take my son on trips out and which play dates or parties I agree to. The main reason being that if it’s going to be an assault on his senses which may send him into sensory overload, it’s better (for everyone) that I decline. Things like house parties where the kids run ragged and tear the place apart or pottery painting parties are challenging because the former has no structure so he literally doesn’t know what to do with himself nor integrate himself into others’ play and the latter is so structured that one wrong brushstroke can immensely upset him and lead to a meltdown. So if I say ‘no’, understand that I’ve definitely considered your kind invitation but it’s probably not the best environment for him.
And finally, if you genuinely want to know how he’s coping with life, ask me. If you just enquire “how are things?” or “how are you?” you’re not telling me you’re ready or willing to hear how things really are. We all have our own daily stresses and strife and might not be ready to hear about others’ difficulties – and that’s ok. I know it makes some people uncomfortable talking about autism and it’s fine, you don’t have to. But if you are ok talking about it, then ask me things like “how is he getting on at school?” or “how are you managing with so much going on?” and I promise to give you an honest answer.
If you read these tips back and eliminate the autism lens from it, that is, imagine that I’m just writing about general tips for effective communication with children, you’ll see themes of authenticity, clarity and honesty which are qualities that all children respect and respond to in adults.
Sometimes we see the disability or condition before we see the person behind it and we need to consciously rewire our thinking to stop doing this. Ultimately the call for easier communication with my autistic son is the same call as that for communication with any child; clear, meaningful and engaged dialogue.
Now, please excuse me whilst I don a silver plastic tiara, floral garland and doctor’s coat – I’m required at a piano recital of nursery rhymes interspersed with acrobatics, imminently.
Photo Credit: Charamelody via Flickr