How my autistic child made me a better communicator

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”.

realisation

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?

what’s normal?

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:

feelings

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.

literal translations

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.

domination

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.

contrasts

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.

Intense, hey?

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.

my take-away

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.

 

Photo by Harshal S. Hirve on Unsplash

*names changed

How I’m turning yesterday’s pain into tomorrow’s promise

I’m the eldest of three children who grew up in a traditional Indian Gujarati household where the gender roles were squarely defined. This meant that from the age of eight, I’d stand on a brown plastic chair and wash the dishes because I was too short to reach the taps. By the age of 11, I was folding clothes, vacuuming, polishing and generally keeping house as well as being chief chopper of vegetables. I wasn’t unlike an Indian entry level kitchen porter who’d wash each spinach leaf in cold water to get rid of the mud (no one likes mud in their bhaji*) but never had the opportunity to do the cool stuff mum did like putting the array of spices in the dishes (freehand of course, no measuring).

low necklines, short hemlines

Being the eldest put a lot of implicit and explicit pressure on me. I had to be the academic role model and also the epitome of ideal behaviour (no boyfriends, alcohol, bad language, backchat, low necklines, short hemlines to name a few) because if I wasn’t our family reputation could be tarnished and no-one would marry me or my sister (cue dramatic music). At least that’s what I was told.

Looking back, I don’t mind that I was expected to do well at school and beyond; it made me aim high and push myself and if my parents didn’t keep reminding me of how hard they were working to enable us to have an education, perhaps I wouldn’t have such a sense of gratitude and value for their sacrifice now.

doors

But I never felt good enough; I never had a sense of worthiness. Praise was directly connected to academic achievement but even then, every accomplishment was met with a “good – make sure you keep doing it”. I formed the connection that as long as I did well academically I’d be worthy of attention from my parents otherwise that attention – however momentary – was inaccessible to me. I believed that my academic achievements were the key which unlocked the door to my self worth but the problem with this was that behind each door I opened, after the immediate high, I was faced with another door to unlock – so self fulfilment was always just out of reach.

My parents weren’t the touchy-feely type; I think post adolescence the most physical contact I had (and still have) with my dad is when I touch his feet in reverence at the beginning of each new year. I’d get birthday ‘pats’ from my mum but no bear hugs or kisses – that’s not to say they never happened when I was a child, they probably did but it just wasn’t the done thing in our house certainly from around age 11 onwards.

and?

So what, you might ask? What difference did it make because ultimately they fought all odds to provide for us, working seven days a week running a grocery shop and scraping by financially such that physical, let alone emotional, nourishment probably never even crossed their minds.

The difference is that if you don’t instil a sense of self worth in your children, they’ll seek validation from others. And if they’re not getting emotional validation from home, then they’ll look for it outside – and that’s risky.

I did just that.

searching

Although I didn’t know it at the time, I had all the usual insecurities that come with being an adolescent Indian girl  – my dark upper lip hair was growing, what was I supposed to do about that? Why was I so plump compared to my tall, elegant White British best friend? How did I navigate the world of fashion when all I knew how to wear were matching tracksuits my parents bought from the cash and carry? And so much more.

My mum and I never talked about girly things like this or feelings generally so I looked outside to learn about the world. I learnt from friends to cake my face with makeup which hid my insecurities about my appearance and to wear fashionable, attractive clothes which hid the parts I didn’t want to draw attention to. The dolled up Reena was more outwardly attractive and drew the attention of the opposite sex – finally, some validation that I was beautiful, clever, funny and worth spending time with.

This all could have gone so horribly wrong. In the wrong company, I could have had my self-esteem eroded to dust or taken a completely self destructive path in my pursuit of worthiness. Luckily, my story didn’t travel that way but I was dangerously close.

And for many young people, this is how their story might play out – regardless of gender.

nourishment

As a culture, we have to make a conscious shift to nourish the emotional and mental health of our young people. I know that it’s harder because historically our ancestors didn’t do this and so it doesn’t come naturally to many Indian parents (my father was beaten daily by his dad and my mother never had positive affirmation from her mother) – but that doesn’t mean that we can’t change.

Don’t get me wrong, we’ve nailed the ‘stiff embrace and patting’ technique – you know the one we give to friends we bump into in the street or relatives we meet at weddings. The type of contact which acknowledges someone without needing to put any feeling into it.

I’m not saying we should dispense physical contact to everyone we meet like chocolates to Trick or Treaters. It’s much more complicated than that and it starts with how we treat ourselves before we think about how we treat our children.

who’s thirsty?

You’ve heard the saying you can’t pour from an empty cup – well for me this certainly rings true. I’ve reconciled with myself not to resent what I didn’t have emotionally whilst growing up and instead to be grateful for the experiences I’ve had which make me who I am today. I’ve learnt to square up to my past without feeling shame or regret and to use my experiences as the foundation to influence positive change in me, my family and wider.

Something which the author Elizabeth Gilbert** said sums this up perfectly:

The things that have shaped me most are the failures, mistakes and the disasters but here’s a very important thing to recognise… failure, disaster, shame, suffering and pain do not necessarily make you a better person unless you participate in turning it into something good…

Never waste your suffering; suffering without catharsis is nothing but wasted pain… If you don’t transform from your pain then it was for nothing, you just suffered for no reason whatsoever… when bad things happen I think “how can I grow from this?”

We’ve all suffered some trauma in our lives – be it actual harm or the absence of something – but we’re all empowered to use what we’ve learnt from it to transform our lives for the better.

what I’m saying to my children

I’ve made a deliberate and conscious commitment to myself to raise my children in an environment of love and positive affirmation. I praise their efforts – not the result – when they draw (even if I don’t know what on earth I’m looking at); I tell them they can accomplish anything they put their minds to; I hug and kiss them everyday not in response to a good report but just because (this sometimes irritates them); I tell them I’m so proud to be their mother; I don’t label them, only their behaviour (i.e. instead of saying “you’re really annoying me”, I’ll explain “the longer you take to put your shoes on, we’ll have less time to play in the park” (don’t be mistaken, I get this wrong daily but at least I’m able to pull myself up on it and correct it).

drops creating wells

Will it make a difference? I think so. The drip effect of showing them everyday that they’re valued as people within their own right – not because of something they’ve said or done – I’m convinced will lead to an inner well of self worth where they won’t need external validation that they’re good enough; they’ll know that they just are.

We are all humans whose primary nourishment comes from love; love of oneself and love to others. And we’re each empowered with how we want our culture to be carried forward for generations to come. Do we want a culture where academic achievements define our children’s self worth? Or where their sense of worthiness is entirely dependent on pleasing others? Do we want to raise our children thinking they need to earn affection like a trader in the market place where self worth is traded on the size of the accomplishment, so the more you do the bigger pat on your back you get?

This is the way to go if we want society to be filled with children who are materially fulfilled at the body level but are emotionally empty at a soul level.

pouring nectar

Love can’t be assumed; it’s not translated through university fees being paid or items being bought. Pure, nourishing love which reaches your soul is felt from one heart to another.

So let’s make a commitment to ourselves to acknowledge our own past hardships and use the strength those experiences have given to us to affirm our own self worth. Once our cup is full we can pour into our children’s through our language and action; remembering that each child is a spark of divine human creation whose deepest need and soul nourishment is simply to be loved.

Without qualification.

Just as they are.

 

some notes:

*bhaji – a dry spinach curry

** taken from a podcast with Oprah Winfrey named Super Soul Conversations; Elizabeth wrote the hit Eat, Pray, Love

Photo by Hossam M. Omar on Unsplash