What is it that makes us Asians so uncomfortable talking about autism?
I’ve found that there’s a lot of misunderstanding – and a general lack of understanding – in the Asian community about hidden disabilities. I remember telling an aunty that my son was autistic and she replied: “There was no such thing in my day; it’s just the concoction of over thinking by western doctors who have nothing better to do. Parents just need to be firmer with their children”. Sound familiar?
I’ve noticed that it’s far easier to discuss physical disabilities with others in the community because they’re more obvious. And people seem more sympathetic and able to reconcile the child’s condition with God’s will – but that’s not the case with hidden disabilities like autism.
Even though we may live in Britain, we’ve kept a lot of our Asian ways for example, through celebrating rites of passage, observing religious days and practices and cooking traditional food. But in other ways, it seems we still need to progress our thinking about the world around us.
I’ve observed that as a community, we place a lot of weight on how others perceive us – and sometimes make counter intuitive choices based on what we think we should be doing. And talking about having an autistic child ventures into the realms of extreme discomfort because many Asians don’t know what it is, how it manifests and why you need to engineer your life differently around your child compared to others.
But we have a choice; we can seize this opportunity to educate those around us about autism and break down some of the misconceptions about our children. Or we can carry on as normal, telling no-one, putting our children’s behaviour down to simply not listening and contributing to a future where they fail to be understood and are marginalised for not fitting in.
The impact of the choice we make is not to be underestimated. By not talking about our autistic children we create a sense of nervousness and shame around the subject. And so, we show up as introverted and uncomfortable. We tell ourselves stories that people might be judging us behind our backs and perceive our family negatively and that our children’s marriage prospects will be restricted. And because we present laden with all this emotional baggage, we end up attracting negative misconceptions from those around us.
Choosing a different path
I’m not prepared to subscribe to that.
Instead of shying away from my son’s autism, I’ve told everyone in our family what it is and how it affects him. Because of this, people now ask me how we are from a place of genuine concern. However my day’s been, I can be honest and authentic talking about it because by bringing them into the world of autism, I’ve effectively given them permission to ask.
By wearing different personas for the different people we’re meeting, we run the risk of losing touch with whom we really are because we’re so obsessed with ensuring the right persona is in place for the group of people we’re interacting with; whether it’s the aunties at the mandir* or the relatives at a wedding.
By committing to just being you – raw and authentic – you can conserve all of the energy spent trying to be the person you think others want you to be and instead spend it on the person who deserves it most – you.
“Ok but if I’m going to a function and I know my child struggles with big crowds, what am I supposed to do?”. The answer is, whatever it takes so that he’s comfortable and so are you. If that means no Indian clothes, wearing ear defenders, arriving towards the end of a ceremony so that he doesn’t have to hang around for hours with unfamiliar people or asking the host to seat your family somewhere specifically – then so be it. You’d be surprised how accommodating and understanding people can be when we let them into our world and show them how these changes can make such a difference to the experience you and your family have.
Last week, I took my six year old autistic son to a bhajan sathsang* which I’d never before done. I’d attempted to run simple family prayer sessions at home previously and gave up because he just couldn’t sit still and was only interested in touching the bells, idols and the artificial (and real) tealights. Despite that, I thought I’d give this a go. I told the host family I was coming with my autistic son and I’d like a place near the front so he can watch the musicians, to which they happily obliged. My son sat for over an hour attempting to sing the songs and enraptured by the orchestra playing around him. By being open and honest, I created a completely different experience for us.
There’s a lot of expectation in our community of mothers being strong and holding it all together but being the parent of an autistic child is exhausting; anticipating their needs and creating a world around them where they feel comfortable and secure takes a lot of energy. So it’s important that we stand up to the stereotyped Mother India* image and ask for help.
Asking for help isn’t a sign of weakness; it’s a sign of strength because it shows that you’ve identified what you want to achieve and you’re using your resources to make it happen.
If your boss asked you to put a pivot table together urgently, would you bury yourself in online tutorials or ask your Excel proficient colleague for help? We’d utilise the resources around us unashamedly to deliver the task. So why don’t we do this for ourselves?
What do you need?
You can’t pour from an empty cup. It’s important to think about what matters to you and to move things around to make it happen. I need time and quietude to be able to write. But my kids are like bulls in china shops and I don’t want to silence them with movies. Instead, my husband has moved his weekend run from Sunday mornings to Saturday afternoons so he can drop my eldest to drama (whilst toddler naps), go for a run and then collect him. This gives me one and a half hours to write. And I’ve created similar pockets of time across the weekend to dedicate to exercise, writing and self care by asking for support from those around me.
United we stand
There is so much strength to be derived from being part of the Asian community. But unless we’re prepared to be bold and go out there, sharing our experiences and talking openly and proudly about our autistic children, the community won’t move ahead with us and we’ll end up abandoning it as archaic and rigid all because we were afraid of how people might react.
Our children deserve to benefit from India’s rich, cultural heritage as much as any other; let’s pave a path together in the world where they’re embraced and celebrated – just as they are.
This piece was written for and published by Anna Kennedy Online – an Autism Awareness Charity
*temple – a Hindu place of worship
* bhajan sathsang – a public gathering at someone’s house where religious songs are sung
*Mother India – 1957 Bollywood movie about “a poverty-stricken village woman who, in the absence of her husband, struggles to raise her sons and survive… Despite her hardships, she sets a goddess-like moral example of an ideal Indian woman”. (source: Wikipedia)