Mala Thapar’s 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.
Autism, more formally referred to as Autism Spectrum Disorders (ASD), are conditions where individuals struggle with social relationships and communication. The rates of autism are increasing. At present, 1 in 88 children are estimated to have Autism, with the rate being 5 times greater in boys than in girls. The exact cause of this increase remains unclear and the cause of this increase is still unknown, but likely to encompass both genetic and environmental factors. Autism is not infectious, contagious or hereditary.
The best way to describe a typical day when living with Autism is that each day is different. Some days are good and rewarding and others more challenging. There are various triggers that can cause anxieties or meltdowns; the best way to describe it is like living in a minefield and not knowing what is going to happen at any time. At the same token, it can be the most heart-warming, rewarding and amazing parenting.
Initially Mala and her husband received very little support. Autism is a hidden disability and people took little interest in learning about it, especially if it doesn’t affect them or impact on their daily lives. This lack of knowledge and interest leads to a vicious circle to the family living with Autism being misunderstood and ostracised both within society and the community and in some cases by close family. At a pivotal point in our lives the lack of support shown by some family members makes you more determined and stronger in life but their lack of compassion and support becomes an unfortunate memory that can not be erased.
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.
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 two plug in 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. There were other families out there in the same situation and through Anna Kennedy’s social networking; there was opportunities to meet with like-minded people and families who were in similar predicaments and the loneliness subsided and friendships were formed and the link with the Charity became much stronger.
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, mainstream was no longer an option and specialist was the logical option given the circumstances.
At the time being a Governor for two years, led Mala to resign due to fighting against the system. Despite the financial strain and stress which led to two tribunals to ensure that her eldest son’s needs were met in the correct educational establishment and additional to this, her younger son was targeted and there were no conclusive facts that were fabricated a few days before the first tribunal. This resulted in moving her youngest son to another School immediately due to this malevolence act.
Through this process, Anna Kennedy Online gave copious amounts of support in order to implement home education for her older son after incidents at School that led to immediate deregistration after the first tribunal. Therapies were implemented for her eldest son to overcome the anxieties besieged upon him.
The Anna Kennedy Online Charity supported Mala and her husband throughout the tribunals and with this support and guidance through such a challenging chapter. Friendships were vital during this time and the Charity was a lifeline at every single hurdle and because of the genuine people in their lives at this time giving such great assistance, they managed to attain the correct educational provision.
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 were tolerating a great deal of prejudice.
Mala concluded “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, from 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. ”
Despite such little funding Anna Kennedy Online is a small charity that does big things and has core individuals that work together to raise the profile of Autism Awareness in the UK and beyond and support families and individuals.
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.
Follow Anna Kennedy Online
Twitter: https://twitter.com/AnnaKennedy1Share This Post: