“What Will People Say?”: Raising Neurodivergent Kids in Desi Households

Raising neurodivergent children in Desi households often means navigating a maze of cultural stigma, silence, and misunderstanding that many outsiders rarely see.

Although being neurodivergent is not limited to autism or ADHD, there is a whole spectrum of neurodiversity.

But what makes an individual identify or be diagnosed as neurodivergent?

The Royal College of Nursing defines neurodivergent as, “The term for when someone’s brain processes, learns, and/or behaves differently from what is considered ‘typical’.”

In 2021, Anglia Ruskin University began researching autism in British Indian families.

A senior lecturer, Dr Steven Stagg, stated: “The British Asian community is hugely underrepresented in autism research.”

He also mentioned the lack of scientific research and data available on such topics.

Challenges in Desi homes are often treated silently, and families who may be different or not conform to cultural expectations are often shunned.

Children born with disabilities are treated as contagious. Words such as ‘madness’ and ‘crazy’ are used in unison to refer to individuals.

These are some of the obstacles parents dread when their child begins to display symptoms of being on the spectrum. They begin to worry when changes become more noticeable, such as delays in age-appropriate skills.

Many parents find themselves in a new array of struggles once their child has been diagnosed with conditions such as autism, ADHD or OCD. This is often due to limited resources and support available in their communities, but also in their homes.

We take a look at the raw challenges parents face while raising their neurodivergent child in a Desi household.

The Stigma surrounding Neurodiversity

Having a child who is not ordinary holds a great deal of stigma in Desi households. Not being ordinary doesn’t always equate to having special needs or a disability.

Nearly all research focused on the South Asian community concerning mental health, autism and ADHD reports stigma.

A common theme that stems from the fear of judgement and negativity around less-abled people, on the spectrum or even suffer from a mental health condition.

This could be the reason why South Asian parents are less likely to raise awareness of their child’s condition to health professionals.

The National Institutes of Health reported that Asian parents were 88% likely not to self-report their child’s condition.

Aklima Khatun, a Paediatric Nurse from London, told DESIblitz:

“Parents often resist early screening or diagnosis, even when signs are clear.”

“Delay in accepting a child has these conditions makes early intervention harder, which is crucial for developmental progress.

“There are difficulties trying to engage with South Asian parents, they do not want the help they can get from learning disability teams as they don’t think it’s necessary.”

In 2007, a study by the University of Birmingham titled ‘British Asian families and the use of child and adolescent mental health services’ discovered that one of the elements considered by the parents was fear of gossip.

This is a reality not even the greatest Desi intellect is free from. It’s a well-known fact that Desi relatives love to gossip without thinking of the implications and consequences of their actions.

Others feared how the news of their child’s mental health would affect the “mother’s standing in her husband’s family” and potentially be blamed for passing on the “madness” to her child.

Once married, South Asian women find themselves bearing the blame for ‘imperfections’ that occur in their husbands’ families.

Children who are neurodivergent can be hyperactive, unable to sit still or focus on an activity for more than a few seconds.

Many exhibit food aversions or feel comfortable with certain foods. They are often unable to understand emotional and behavioural cues.

A great deal of these children can find settings such as Desi weddings and gatherings overwhelming due to a sensory overload. This comes from the overlapping chatter, overwhelming aromas from the food, flashing lights and loud music.

This affects their inner calm. Some may look for a quiet space, others like to rock back and forth.

These repetitive movements are known as stimming. Behaviours which elders and family members label disrespectful and the makings of a ‘bad child’ without giving a second thought.

However, the National Autistic Society reassures those concerned that stimming is quite the opposite.

Stimming allows the child or individual to release excess energy.

This further confirms the lack of knowledge and ignorance towards neurodiverse children and the campaign of negativity towards them as though they deserve it.

Rafiq, from Birmingham, says: “I was born in Bangladesh so I was afraid of people finding out my son was different.

“He hasn’t been diagnosed yet but I always get nervous when people make comments.

“My son likes stimming, he makes car sounds, something he finds very comforting but others find it very disruptive.”

Many parents are forced to accept negative comments directed at their neurodivergent child, such as being called “hyperactive”, “very naughty” and “loud”, rather than being assertive and vocal about their child’s condition.

Shahida, from Birmingham, adds: “When my son turned 5, he was diagnosed with ADHD and that was not the worst part.

“The worst part was the way everyone judged him, pointed out how he was ‘bad’ in every way.”

Feeling Isolated

Isolation affects both parent and child. While other children can socialise and build relationships easily, children with autism and ADHD are often left out due to not being able to engage with their peers.

UNICEF stated: “Many children with autism have trouble managing social interactions.”

Parents receive assistance from school, as well as having access to several organisations which are sensitive towards South Asian and BAME communities, such as BAATN (Black, African and Asian Therapy Network).

Primary school teacher Jusna told DESIblitz:

“One of the biggest challenges we face, first of all, is getting parents to acknowledge that their child is different.

“We might have a child that comes into reception or year 1 and we already know this child is neurodivergent but the parents, it might take them up to two to three years to acknowledge that.

“We ask parents to come to workshops and give them strategies and tools to manage at home and in other places.”

“And we often find children who will turn up to school on a Monday morning and they’re very dysregulated because they’ve had a difficult time over the weekends.”

The lack of family support and understanding leads parents to feel like they are forced into isolation, left out of family gatherings, or they choose to isolate rather than have people judge their child.

In South Asia, many parents believe that if their child is playing with a child who is less-abled or has a learning disability, their perfectly ‘normal’ child will start mimicking similar behaviours.

Shahida says: “Eventually, I had enough, it was either my son was really naughty and out of control or it was me.

“They would say because I’m a single mother, I was being too easy on him and that I need to discipline him.

“My son stuck out like a sore thumb and one day I just stopped inviting family over or going to their houses.”

Shame & Guilt

It’s not easy being a parent to any child. But when a child is neurodivergent, they pose a new set of worries and difficulties, often leaving parents feeling a sense of shame and guilt.

Many Desi parents are also known to deny that their children are neurodivergent and often make excuses or keep the child away from gatherings.

While some children display challenging behaviour, they can be academically strong and independent. Others are unable to communicate their needs, are not able to independently take care of themselves or live the life in the same way as their peers.

London-based Shams says: “My son was diagnosed with autism when he was 5. He’s 17 now and completely dependent on me and my wife.

“We are always watching him, he has no sense of danger or the skills to live like his peers.”

“We often think about his future but hope to take care of him as long as we can.”

Several children remain dependent on their parents throughout adulthood, leaving their parents worried about their future. But also processing a loss in the sense of knowing they will not see their adult child graduate or find a life partner.

Shahin explains: “I’m always stressed about my son’s future. He’s 6 and autistic.

“He is nonverbal, he may never learn to be toilet trained and requires a dietitian.

“There will come a time when me and my wife will no longer be able to care for him.”

A study on South Asian Families in Australia discovered that parents found it hard to accept their child’s diagnosis and, in the process, found that it had an impact on the parents’ mental wellbeing.

Breaking Cultural Norms

Amid all the stigma, many parents have pushed societal judgment to one side and have been researching and educating themselves on being neurodivergent.

There has also been a great shift in mindset – from “what will people say” to “what is best for my child”.

Schools are being more supportive and inclusive towards children of all abilities.

Most schools have a SENCO/SEND department aimed at helping children with particular needs adjust better to their school environment.

Jusna says: “Parents who work well with us, take on board what we say, we find those children
will almost achieve their full potential.

“And we have had children who leave doing really well in their Year 6 SATs.”

Rafiq adds: “Before, I would hear people say, children who get support in class are academically
disadvantaged and that they’ll never make it to GCSEs.

“But my son’s school SENCO has been fantastic, he’s now talking more and I have seen a positive change in him.”

However, this still raises the question: how can we truly tackle challenges in the Desi household and build a positive attitude that will impact the generations to come?

The South Asian community is a strong community with many positives. Yet like all communities, there is deep-rooted stigma and fear which needs to be tackled with understanding and open conversations.

Parents of neurodivergent children should make themselves present, speak up and challenge negative mindsets regardless of how difficult it may be and be part of creating awareness among their communities.

There is no question about how better and accessible resources need to be made available for parents who are the minority in their communities.

Of course, these changes will not happen overnight but rather in baby steps. But once these changes are implemented, it will allow parents to be more confident in approaching what they choose to do about their child’s condition and how they choose to seek help.

After all, whether a child is typical or neurodivergent, every child has the right to live life to the fullest without judgement, and parents should be able to feel welcome among family and friends without having to fear gossip or isolation.