“We do have autistic children in our community. It’s brushed under the carpet. Some people don’t bring their children out."
Autism is a behavioural disability that lasts a lifetime. It affects almost 700,000 people within the UK alone. A startlingly high number, the condition contributes to 1.1 per cent of the population.
Yet, how many of us really know about autism, and what it means for those suffering from it?
Pam Malhi is a British Asian mother who has experienced autism in her own family first-hand; through her daughter, Aaisha.
Speaking in detail about her experiences with DESIblitz, Pam explains how vastly different her lifestyle is from other Asians.
Aaisha is 18 years old, and has suffered from autism her entire life. Rapidly growing into a young woman, she needs 24 hour care and support:
“There is no cure for autism. It’s a development delayed disorder so basically, you’re child will not develop at the normal rate that other children will,” Pam tells us.
“It won’t have an understanding of the world we live in. It won’t fully comprehend other people’s thoughts. It has communication problems, it has problems with social interaction, it has problems with imagination, language and speech.”
Depending on the individual and their level of condition, autism can affect people in a variety of ways according to the Autism Spectrum Disorder (ASD), where sufferers incur difficulties with social communication, social interaction and social imagination.
Aaisha depends on Pam for almost everything; whether it is to brush her teeth, feed her food, or help her get dressed. As Pam explains, Aaisha struggles to understand what is going on around her, causing her to become anxious; and so she requires a strict routine to help her through the day:
“I’ve got accept that she’s never going to lead an independent life. So she’s always going to need a carer everyday for the rest of her life. She’s never going to go on to experience things that normal 18 to 19 year olds her age [do].
“It’s very difficult, it’s devastating to get the diagnosis that your child has a disability with no cure. But with the right love and support, your child can go on to make progress,” Pam tells us.
Watch the video with Pam Mahli and Aaisha to learn more about their experiences with Autism:
One of the biggest factors of having any kind of disability especially within the British Asian community is engaging members through positive support and creating awareness. However, as with many Asians who have suffered some kind of disability, this is easier said than done.
According to The National Autistic Society, many people are totally unaware of the symptoms related to autism, and can just brand them as behavioural difficulty, where a child needs to be sanctioned or disciplined. This is especially the case when those suffering from it don’t actually ‘look disabled’.
As Pam says: “On numerous occasions you get people who think it’s a mental health issue, so my child should be sanctioned away and only be brought home on weekends.
“You can go to places like the Gudwara and people look at you because your child is flapping or your child is not sitting down, or your child is doing something that doesn’t seem appropriate in society. But that’s just part of her autism – she has no control over what she does and how she reacts to certain situations.”
For British Asian communities in particular, these differences can breed a greater ignorance from people and sometimes a deliberate disregard for why such differences or disabilities exist:
“I think particularly within the British Asian community, we don’t tend to understand disabilities. We can be ignorant to other people’s needs so it’s a case of, ‘Well it doesn’t really affect me so I don’t need to know about it’.”
Statistics show that 1 in 68 children suffer from autism in the UK. This is evidence enough that there are numerous children within the British Asian community who need vital support:
“We do have autistic children in our community. It’s brushed under the carpet, autism is. Some people don’t bring their children out. I don’t know if they’re afraid, or what kind of reaction they’re going to get from other people,” Pam says.
“I had someone who got into contact with me via Twitter, and he said he hasn’t been to the Gudwara in 7 years, because of the way people look at him and his daughter. And that is just so sad. Why are we not understanding of other people’s needs? There’s other people out there who understand what autism is, but us as a British Asian community – we ain’t got a clue.”
Yet, while traditional Asian values do still exist in British communities, Pam believes it is changing: “Some people have been completely supportive and some people don’t want to know. Generally, I have had very positive feedback.”
It is clear that with a mother like Pam, Aaisha is one of the lucky ones who has the appropriate care she needs to deal with her disability. However, many others in Aaisha’s situation have little hope of sincere support from many in the community.
For this reason Pam believes that by opening doors into the community she can encourage a wider understanding of autism and she has started a support network that does exactly this.
Pam hopes to offer workshops and classes for those families who have autistic children and are unsure of what to do. If you want to find out more about Pam’s support group, visit her website: Hope Love Autism.