Autism in the Asian Community

In 2017 Asian Mums Network interviewed Mala Thapar an Asian mum whos eldest son was two years old when he was diagnosed with Autism and both her and her husband knew nothing about Autism and during the diagnosis; a panel of three advised them to do their own research after handing a leaflet.

Despite contacting various charities, there was no response which led to further frustration and also we were also advised to keep this disability confidential in order to be ‘accepted’ within society, but at the same time trying to learn about Autism.

Mala gave up her career to support her son after an incident occurred during a holiday club excursion when he wandered off and became lost and was lucky to have been found unharmed. The School were notified as Police were involved but it became quite clear that his then school was not supporting him enough. After waiting patiently for years for a statement despite an early diagnosis, the mainstream was no longer an option and specialist was the logical option given the circumstances.

Alongside this, her eldest suffered bullying at school which got worse, however, one evening Mala was watching ITV’s London Tonight and saw Anna Kennedy give an interview about a campaign called ‘Give Us a Break’ which tackled the issue of Autism and bullying in schools at break times. Mala contacted the Anna Kennedy Online charity immediately and they telephoned her back straightaway and Anna herself offered talks at the School to raise awareness of Autism for the children and a separate one for parents, carers and staff – this marked a huge turning point and life took a very different direction from here on.

Alongside the daily challenges faced, they experienced 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 thus her and her husband was tolerating a great deal of prejudice.

Anna Kennedy OBE explained that a lady from Pakistan was so inspired by Anna, which she qualified as a Speech and Language therapist and set up a classroom for children on the Spectrum, instead of hiding her child. This is one of many cases from around the world that Anna has inspired, the impact of this incredible woman and her core team has changed the lives of many and they are indeed forging the path to Autism Awareness like no other Charity.

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, eight 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.

“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.” Mala Thapar 

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 goes on to explain that since her son was diagnosed with Autism and subsequently herself 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 she thought would stand by them, 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, she and her husband 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 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, Tally’s son’s Autism has been described as ‘a punishment for something she had done in her previous life’ She explains, “How can anyone argue with someone who holds such ridiculous views in this day and age?” She is so proud that as part of the Anna Kennedy Online Team as a charity she believes 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’.

Mala concludes “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. Get in touch with Anna Kennedy Online and you will feel part of a network and have the support that you may not have in your current predicament. There are cases like this all the time, with no diagnosis, to coping with different hurdles including education through to employment. Cultural stigmatisation and unnecessary family pressure is just an additional strain placed on parents that is unjustified and unfair.”

Asian Mums Network

 

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About the author: AMN