Anna Kennedy Online – Autism Awareness Charity
“Did you hear about her son?” – Shattering the Stigma around Autism in the Asian Community

“Did you hear about her son?” – Shattering the Stigma around Autism in the Asian Community

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.

Asian ways

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.

Crossroads

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.

But, how?

“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. 

Tailoring experiences

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.

Great expectations

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.

*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)

Reena Anand

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Ketan Aggarwal – my story

Ketan Aggarwal – my story

First of all, let’s get one thing straight. Autism is not a bad thing to have. There are several examples of individuals who have overcome their difficulties with great success such as Charles Darwin, Albert Einstein and Leonardo Da Vinci.

When I was first diagnosed as autistic, I was hit back by it quite hard. I didn’t quite understand what it was, and I just wallowed in self-pity. I refused to leave the house, lost my job and was slowly deteriorating. One day when I was watching TV, the Paralympics came on and that was almost my ‘eureka’ moment. I thought to myself, ‘hold on. These people all have disabilities but they’re still more able than most people and they’re doing incredible things so why can’t I?’

When I first told my mother, she was speechless and left the room, but only because she was upset, and she didn’t want to make me upset because she was upset – if that makes any sense. I totally understood where she was coming from and personally would have done the same if I were in her situation. Luckily for me, she has been so supportive from day one and without her I don’t think I’d be the person I am today.

At the beginning, I never disclosed the fact that I was autistic. From my personal experience, and from the experiences of many of my Asian friends, discussing mental health, learning disorders and disabilities within our families is not as easily or openly done as it seems to be in other cultures and communities.

I was invited to appear on several TV shows after my appearance in the news, but I didn’t want to go on TV just for the sake of being on it. I’ve never been one for fame, but love is just the best feeling one can ever get and I’ve been single for a while now, so I decided to apply for ‘First Dates.’ When the opportunity to appear on it arose, I couldn’t say no. The production team stood out the most for me. They are just such wonderful people and where the waiters and waitresses receive a lot of attention and praise, I think it’s a shame that they don’t. One of the first questions they asked me was, ‘we know you’re autistic. Are there any adjustments we can make to make you feel more comfortable?’ This just set my mind at rest and I knew I was in good hands.

The date was so much fun and for anyone with good intentions, thinking of applying, I would say, ‘don’t think, just apply.’ They have so many people applying and if you have the chance to find love, you should never pass on it. Since my date aired on 4th June 2108, I’ve been overwhelmed by the support that I’ve received. Although it didn’t work out for me on the first time trying, it’s helped with my confidence and raised awareness on autism and mental health in general, so it was well worth doing. I hope anyone reading this fulfils their true potential and when you do, please click here  to message me let me know. ?

Anna Kennedy Online and I will be collaborating again so watch this space!

Autism and cultural issues

Autism and cultural issues

Alongside the daily challenges faced by a family affected by autism many families experience a great deal of stigmatisation and disapproval from the Asian community, who have often been quick to judge and form opinions based on misconceptions and ignorance and having little or no knowledge .

Anna Kennedy OBE Autism Campaigner throughout the years has spoken to many families who are experiencing  Cultural stigmatisation and this is unnecessary family pressure and an additional strain placed on parents that is unjustified and unfair.

Recently at an event of 150 women from the Asian Community Anna asked if anyone in the audience had a family member diagnosed with autism. Not one person raised their hand. Later on in the evening 8 parents approached Anna and her team at the event highlighting they were parents and struggling and felt that they could not speak in front of the group for the fear of stigmatisation.

Mala Thapar Charity Champion from AnnaKennedyonline and mum to Arun who has a diagnosis of autism shares “It’s so important to reach out to the Asian community to recognise and accept all the challenges and inspiration that a child with Autism can bring to your life.

There are families out there that do not know what to do and whom to contact, this will give them the opportunity and also to educate the community rather than ignore this.

There has to be a much better understanding of Autism and to learn about it, embrace it and perceive this as a positive. Since being part of the Charity Anna Kennedy Online I now feel part of a supportive network.

Mala shares since my son was diagnosed with Autism and subsequently myself being very vocal about Autism after meeting with Anna Kennedy, it was very difficult and astonishing to experience the negative attitudes, ostracization and ignorance from a society and culture that were meant to be supportive.

Almost overnight those whom I thought would stand by us, disappeared, and suddenly no longer existed and realised that sadly, due to the mentality and lack of understanding about Autism as being a hidden disability became an impossible hurdle and breaking away led to a huge relief. Through these experiences, we have learnt to live a different way of life and feel that there should be much more awareness surrounding mental health and disabilities within ethnic minorities.

Many parents from various backgrounds have contacted AKO and by reaching out could open up a whole new chapter and meet a new network of people that understand.

Tally

Tally Nothey parent of Taran also shares ‘Life for a child with any disability can be demanding on so many levels, but I’ve discovered that some of the most difficult and challenging aspects come from the people who should be offering support and love unconditionally.  And that’s family and community.

I have been blessed with the most understanding and supportive family who love my son who has Autism and my daughter equally, but I have also witnessed prejudice, a lack of understanding and awareness of autism within society.  Many Asian people with a disability are treated as second-class citizens by their own families. They are hidden away from society, ashamed of the stigma.

On many occasions, my son’s Autism has been described as ‘a punishment for something I had done in my previous life’ How can anyone argue with someone who holds such ridiculous views in this day and age?

I am so proud that as part of the Anna Kennedy Online Team as a charity we believe that all people, regardless of disability, deserve the opportunity for a full life in their community where they can live, learn, work and play alongside each other throughout their lives and one day remove disability stigma and this culture of shame’.

Anna Kennedy  says a few years ago I spoke to a mum from Pakistan who was so inspired and felt empowered after speaking to Anna she qualified as a Speech and Language therapist and set up a classroom for children on the Spectrum, instead of hiding her child as her husband demanded.

There is nothing to be ashamed of being a parent of a child on the spectrum . My sons have taught me so much and given me strength and skills that I never even knew I had within me.

Please get in touch with us at Anna Kennedy Online and always remember you are not alone and we are a Charity that care.

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