We were over the moon when our son was born five years ago. After my earlier miscarriage – see Don’t say the ‘M’ word – I was in a heightened state of stress wondering if I’d get pregnant again or be able to carry a child to term.
When he was born I was still in a state of shock that he’d actually arrived (the 22 hour labour did make me wonder if he ever intended to appear) until he was physically given to me naked and scrawny and I enveloped him in my arms in a way that told him he was the new love of my life and into whom I’d pour every aspect of myself to nurture him. Like a mere 2% of the population, he was born on his due date which just made him more special (I value punctuality in everybody) but little did we know how special.
something’s not right
We suspected something wasn’t quite right when at every parent’s evening we were told that he’d met or exceeded all his EYFS goals except one – social and personal development. He struggled with sharing and could be dominating and loud, sometimes hitting out but I just put this down to being an active little boy.
Another parent’s evening came and went and then another. Two years passed; the feedback was the same. Jay* was different – and displaying increasingly challenging behaviour. One day the nursery sent me a video of him throwing books and chairs around the classroom; the rest of the children had to be evacuated whilst the staff tried to calm him down. As a parent I’d constantly ask myself if I’d spoiled him because he was our only child; maybe we missed the cues when we ought to have been firmer setting boundaries. Maybe we’d created a child who was totally out of control and would never conform to an educational establishment; the guilt and anxiety seemed to pile on exponentially with each nursery report.
They told me that in its 15 year history, they’d never seen a child like him before – that was a stab in the heart if ever I’d had one.
searching for answers
For two years I knocked on the doors of every relevant medical professional; clinical psychologists, speech and language therapists, occupational therapists and paediatricians. In my outwardly ordered life, I’d plan our family meals and weekend events, ferry Jay between singing, dancing, martial arts and music classes, but inwardly I was in a state of complete uncertainty. Something was happening to my son but I had no idea what, or why, or how to fix it.
Every out-of-the-ordinary tantrum would be calmed with distractions such as YouTube nursery rhymes or biscuits and lots of reminders of how much we loved him. He was our only child and his behaviour is all that we knew. I’d use other kids’ behaviour as a comparator and rationalise Jay’s behaviour against this, always keeping that inner monologue going that he was just an active, clever and exuberant little boy and explaining any seemingly irrational behaviour away.
Finally we obtained a diagnosis of autism in 2018; Jay was aged 4.
the prodigal son
For most of his life, Jay was the only child. Between his parents and grandparents not to mention his aunties and uncles, Jay was doted upon as if he were the first child born in the world – ever.
And then I had another son.
This one (at least so far, although he has his moments) is neurotypical. This is just the science-y way of saying he’s not autistic and what in base, common language would be called “normal”.
It was only after the birth of Ash* and over the past three years that I’ve learnt and understood what “normal” child behaviour actually is (though there are days when I think he’s auditioning for a devil child movie role; he’d get the equivalent of an Oscar for a three year old).
I’ve also seen how Jay’s autism has influenced his brother’s behaviour. As the big brother, Jay is idolised. But with that comes the need to play with the same things Jay plays with, draw with the felt tips that Jay uses and copy the behaviour which Jay displays when he’s frustrated. The latter is extremely tricky; how can you explain to a three year old that the reason you’ve given Jay more latitude to let off steam when he’s kicking and screaming is because he’s neurologically different but that it’s totally unacceptable when he does the same and will initiate the warnings – timeouts – repent process?
Up until Ash was born I didn’t realise I was an autism parent – I thought I was just a parent going through the usual motions of having a child who didn’t listen, would test me with his behaviour and drive me to every parenting resource on the market to do with establishing good feeding habits or a sleep routine. Ash’s arrival showed me how different my parenting experience was from those with neurotypical children.
Here are just a few examples of their differences and how they manifest:
Jay has an extraordinary vocabulary way beyond his years; he can tell you the rules of English grammar with the parlance of a prim and proper school teacher. But he can’t label his feelings beyond happy, sad, angry and more recently, bored (is it a rite of passage for kids to learn this word and use it at every possible opportunity?)
So when he came home and said he felt ‘devastated’ I thought “that’s it, we’ve cracked it – he’s mastered how to express himself!” (I had parked asking about the actual cause of the devastation momentarily) for this was a momentous occasion. Except it wasn’t and he’d heard the story of Romeo and Juliet at the Year 5 assembly and the word ‘devastated’ was used to express the feelings of the Capulet and Montague families at this union. [Note to self: (i) emotional labelling won’t just hit him like a meteor and (ii) remember that he has a razor sharp memory which can often mislead people to think he actually knows what he’s talking about…].
In contrast all Ash ever talks about are his feelings, like a Hollywood diva that’s overacting and to whom I have to offer a lens of realism, i.e. you’re not starving; you ate your lunch 30 minutes ago.
The other week I said to Jay “you’re the apple of my eye” and he looked at me with the most confused expression. “What are you talking about mummy?” he said. I replied “it’s just an expression, it’s a way of telling somebody that you really mean a lot to them”. “Oh” he said and looked up and away in thought as he often does. “In that case mummy” he said with a beaming smile, “you’re the cucumber of my eyebrows”.
I often fall into the trap of using abstract language or terms when I’m talking to Jay and which his brain struggles to compute because he takes things so literally; for example, if I say I’m coming in a minute, he’ll start counting to 60. The use of expressions or common phrases is particularly unhelpful and can make a standoff situation worse but on this occasion, I’m glad I tripped up. Jay found a new way to express love for me. And it was the first time ever I’d been called a cucumber.
Ash on the other hand chooses to express his love by parping on my lap. Go figure.
Sharing doesn’t come naturally to Jay. I’ll tell him to share, he’ll acknowledge my request, tell me he’s sharing (and believes he is) but he’s really not. Jay has an innate need to control proceedings. If it’s a tea party he’s in charge of the setup, menu and guests. You’re welcome to come with your teddies and toy characters but you don’t get a say in what you’re eating or where you’ll sit. Kind of like a tea-party-throwing-child -dictator; and this applies to everything. For example, he loves to play Articulate but the sand timer empties at 30 seconds. Because this simply isn’t acceptable to him, whilst everyone gets 30 seconds to answer as many questions as they can, Jay gets 1 minute 30 seconds. He’ll unabashedly (remember the emotions thing, he doesn’t feel embarrassment) turn the timer over until he’s completed 1 minute 30 seconds.
Invariably due to a combination of his intelligence and his cheating, he wins the game. And this is the result he expects every time because in his mind everything is polarised; win or lose; black or white – grey just isn’t a thing.
Ash however doesn’t care who wins Articulate (we simplify the questions for him). He loves the end of the game because it means he can put the triangular playing pieces on his fingers and pretend to be a witch.
Oh the paradoxes, I could rattle off new ones everyday. Jay loves a loaded cheese toastie but doesn’t like melted cheese on his pasta; he insists on wiping every bit of food from his fingers when he eats so they’re immaculately clean but will happily pick up all sorts of unknown rubbish from the streets or dig soil with his hands. His room must be clean and tidy right down to the positioning of his favourite Lemur toy but his activity shelf downstairs is permanently at risk of collapse because of what he hoards there; one day the slight shift of a pencil is going to cause a paper hurricane complete with tumbling yo-yos, plastic medals and paraphenalia from the CBeebies magazines.
Ash’s just permanently messy.
broken record syndrome
At one point I wondered if I’d mastered invisibility because it seemed everything I’d say to Jay just wasn’t heard. I’d repeatedly say he needed to get ready for school (translation: put your shoes and coat on and wait by the front door) and even after the tenth request – nothing. The little one however, upon the first request, completes this and is now swinging from the bannisters trying to entertain himself whilst he’s waiting for his older brother. So I’m getting more stressed, we need to have left for school and I’m worried my morning plans will be thwarted by a hospital visit courtesy of the bannister swinging child attempting a trapeze act.
Many versions of this going wrong later and me generating red mist, I now have a better understanding of how the autistic mind works; I’ll split my generic request into three specific ones and only deliver one at a time. First shoes, then coat then door. Job done, well for the purposes of exiting the house. This manner of communication needs to be applied to every interaction with Jay, whether it’s a request to come to eat at the dining table, do his homework or get ready for bed.
But actually I’ve come to learn that this isn’t about dumbing down communication with an autistic child or heightening communication with a ‘normal’ child. It’s about clear communication – and everyone benefits from that, children and adults alike.
Don’t we all like to be told what’s required of us, why, the objective and then be acknowledged when we’ve executed something well? That doesn’t mean we’re autistic.
I believe that being more mindful in my communication has made me a better parent to both children. I take my time to explain what needs to happen, why it’s happening, coach them through the consequences of not doing so and acknowledging them positively when they do what’s required, especially if it’s off their own backs.
In doing so, I’m showing them that I respect them as people within their own right; they may be little but their voices are as valid as anyone else’s. I don’t adopt the role of a parent-dictator whose orders must be obeyed; just as this wouldn’t empower or elicit engagement with my team at work nor would it do so at home.
Having to pale back the language I use and be really clear on my intention when I’m trying to communicate something has benefitted me in all my roles as a parent, manager, friend, wife, daughter and sibling. This method has helped me to go inward and understand if I’m asking for something because it’s comfortable and the way it’s always been done or because there’s a necessary value in doing so. And it’s enriched my relationships as a result because there’s purpose and rationale in what I’m communicating.
Yes it’s stressful and sometimes overwhelming being in a high octane household coping with the din of light sabre fighting with intermittent stopping to make armoury out of construction bricks or do an impromptu dance to Rita Ora – all before 8am. But I’m so grateful for the challenges I face as an autism parent; it’s forced me to tap into my inner reserves of strength, to question and to adapt how I communicate and gain a better understanding of how people like to receive information. It’s made me a better parent, a kinder person and an empathetic team leader.
And adopt the existential persona of a cucumber.
There’s not many that can boast of that.