Autism creates an interesting reaction amongst Indians.
There’s the Fix-Its who’ll say “we’ll find a doctor in India that will have a cure” (because obviously all other doctors pale in comparison), the Spiritualists who say “we’ll pray that it goes away” and the Ostriches that say “he’ll grow out of it / he looks normal / he’s just a typical boy”. I’ve heard it all.
I think the one that probably annoys me the most is when someone who’s spent an hour or so with my son says “he seems fine to me, you’d never know he was autistic”. Telling me that he doesn’t seem autistic trifles my three year battle banging on the doors of medical professionals looking for answers, to the mere wave of a dismissive hand.
They say still waters run deep. Well never has a truer word been said about my son. He can go from playing a boardgame quite merrily, humming A Million Dreams from The Greatest Showman to full on tears, tantrums and rage in about the time it’s taken you to read this sentence. Oh, and it was probably caused by something as predictable and innocuous as landing on a snake during a game of Snakes and Ladders.
The spectrum in autism spectrum disorder is so apt; today a meltdown could be caused by his brother stepping on a Lego model by mistake when yesterday it was shrugged off. Or me climbing the stairs ahead of him making me the ‘winner’ when normally he’s running up them oblivious to who’s around.
Suffice to say that everyday is an adventure where we learn new things about him, what he likes, dislikes, sets him off or creates anxiety. A few years of this has enabled me to tune my antennae to look for ways to help him be as comfortable as possible wherever we are.
After a few painful travel experiences involving queuing, lots of frustration and my head teetering on the brink of explosion, I’ve learnt to scout out the facilities at every place we travel to and from to minimise the anxiety and bouts of infuriation – for all of us.
When we recently travelled from Heathrow, I was so impressed at the care we received to help us have a smoother journey, from wearing a lanyard as a cue that we needed a bit of extra help and prompting staff to offer it, the border staff who took us straight to the passport checking desks and the stewards that let us board early so we could settle our son.
Where’s his father?
So it was quite a contrast when I rang the airline (who shall remain nameless – being sued isn’t that appealing) ahead of our departure to see what facilities were available upon landing. I explained what triggers can lead to my son’s meltdowns and what facilities I’d experienced previously to give them an idea of what I was enquiring about. I received this response: “but isn’t his father with him?”. I paused. Maybe I didn’t explain my question clearly enough. I tried again. I slowly explained who was travelling, my son’s condition and what can help us have a smoother journey. I was again met with:
Operator: “but ma’am, you just said his father was there right?”
Me: “Err, yes”
Operator: “then can’t the father deal with him?”
I gleaned a few insights from these comments. This operator knew as much about autism as I do about the diet of the Lappet Faced Vulture (don’t scratch your head; the answer really is zilch). He also harboured a somewhat archaic and paternalistic outlook that the ‘man’ of the family could surely save the day and deal with any of his son’s issues (I’m only the mother, pah! In his eyes I probably shouldn’t even be making the call to the airline, far too official for my rank). This airline evidently hadn’t rolled out any hidden disability awareness training for its staff (I also think the general customer service training is questionable…). But I don’t blame the operator.
Ignorance is no defence but equally, education about hidden disabilities is our collective responsibility if we want to create an understanding and tolerant society.
In the Indian community, we don’t talk about problems with our children or the difficulties we have raising them. We love to shout about our children getting into the best schools or being inaugurated into one of the holy trinity professions (doctors, lawyers and accountants) but we won’t say how hurt we feel if they’re excluded from school or in any sort of trouble.
There’s a palpable fear of seeking advice out of shame that we will be judged as being inadequate parents.
This cloud that hangs upon our community is serving no-one. Not the child who could be missing out on support and resources they’re entitled to nor the parents whose mental wellbeing is at risk keeping up this Little House on the Prairie charade of perfect family life whilst secretly imploding within.
Well I’m calling it out.
Yes, I have an autistic son and yes, it’s incredibly challenging. There are days when I have to scream because every single request is met with protests, tears, backchat and foot stamping – and it might only be 8:00am. The other day in all the din I told myself to go to my happy place – but I couldn’t even remember where it was because I didn’t have a second’s peace to collect my thoughts when the diatribe I was being subjected to was just so loud.
Yes, there are times when we eat out that I want to shrink away because he won’t stop pouring the salt, waving the knife or the wine glass or anything else on the table, simultaneously making boisterous noises, whilst the family on the next table eat in peace stopping occasionally to quip with their children about the day’s adventures. Seeing what ‘normal’ family life could be like can feel like the sharp sting of a needle.
Yes, playdates are anything but fun for me; I spend the entire time checking he’s emotionally sound, fearful that an innocent push or shove from another child might lead to a crying, foot stamping meltdown that will take the best part of 40 minutes to recover from.
But in every challenging moment I have with him, I can draw from an abundance of times that he’s made my heart swell with pride and made me feel so grateful to be his mother.
His eyes see what the rest of us miss. We turn a door handle and walk through a door. He stops to observe the mechanism within the door and the effect of the turning on it. He identifies the scents of flowers. He can create stories on the spot with a theme, purposeful characters and structure whilst simultaneously acting out the parts. He can recall details from two years ago and link them to something that happened today (the memory thing is usually my undoing because he never forgets what I’ve promised him (usually chocolate) as a last resort to getting something done).
And I challenge anyone to beat him at a game of eye spy.
My husband and I might be the foundation of our little family but no house was built on foundations alone. You need walls and a roof. For a long time the perfectionist in me said I could cope with anything life threw at me, alone (see my previous post on Handling Grief). It took me a long time to say ‘I need help’. The people around me had no idea because I’d mastered my Little House on the Prairie charade but when I reached out, sure enough, many hands outstretched to grab them. These pillars and roof safeguarded the foundations.
I explained to my extended family what autism was and how it affects my son – and me. Now when they call, I can freely say if I’m having a good day or not, have a rant about how the incessant form filling for support for my son feels like I’m banging my head repeatedly against a brick wall or how tired I am because he wouldn’t sleep alone last night. The conversations I love are the ones where I can say he’s had amazing feedback on his concentration in class or how well he played a board game with his peers. The point is that I can just be me. No shoving things under the carpet or walking around with a painted smile on my face out of fear of judgement.
Yes, I have a son who’s autistic.
Yes, he’s different.
And yes, I’m going to keep talking about it until such time as the sense of awkwardness around the subject no longer exists.
photo by Alexander Hafemann on Unsplash.com