Free to be me…. South Asian and neurodivergent?
No, they just need to learn to sit on their hands when they want to flap, they’ll soon grow out of it!
12 years ago, I chose to see an Asian therapist from a reputable practice, with a special interest in ADHD. I mistakenly believed she would understand Asian cultural dynamics and therefore, better support me and my child, newly diagnosed with ADHD. Instead, she recommended that I remove my son’s ‘label’ from his records, otherwise it would damage his prospects!
I left that therapy feeling defeated. Was I just bad at parenting, unable to set boundaries? The years that followed were filled with put downs, failing to control my son’s inappropriate emotional outbursts, his struggle to follow through instructions, to remain seated at the table for longer than 10 minutes, not realising how much he was becoming his own worst critic, beating himself up for not being good enough. Back then, the abundance of information (and misinformation) we now have, did not exist. Thank goodness I was able to recognise the damage this societal pressure to conform was doing to my child.
Resilience is a hallmark of ADHD, and I devoured every piece of information I could find. I became an advocate in the playground, supporting parents struggling to access special education needs provision.
What I saw broke my heart, particularly the South Asian children failed not by schools, but by their own families.
Even when schools offered support and education plans, many South Asian parents were in denial, speaking in hushed tones about their child’s struggles, afraid to say the ‘A’ word, fearing blame from extended family members for what they saw as ‘character flaws.’ Telling the child that flapped his hands to sit on them instead. They clung to the hope that their kids would ‘grow out of it,’ not realising the harm this denial caused.
Fast forward to 2023, and finding a therapist for my eldest daughter, diagnosed with ADHD and autism in 2021, is like winning the lottery. Waiting lists for cognitive behavioural therapy are endless, because of course, everyone is getting diagnosed these days, right?
Before you choke on your chai, I’m just kidding! We’re under-diagnosed across the board, but you’re even more likely to be missed if you’re female and Black, or Asian.
We eventually found a therapist with glowing reviews, TV appearances, and magazine features, who just so happened to be South Asian.This therapist was good, except for the fact she would not acknowledge the autism or ADHD diagnosis, even when we were often 5 minutes late to appointments.
Instead, she went to lengths explaining time management tools……….yes we know how to use a diary, yes we know how to set multiple phone reminders, yes we read the address for the first appointment several times over, but the brain saw a different, more familiar sounding address to the one in print, so we ended up in the wrong place and were late.
BUT SHE STILL WOULDN’T ACKNOWLEDGE ADHD might have a part to play in this!!!!!!!!
Fear and stigma often dissolve when we speak openly. I struggled to explain autism and ADHD in Gujarati and my broken Hindi. To my surprise, there was a good level of understanding and acceptance of neurodivergent traits among the older South Asian generation. They felt these differences have always existed, but you just accepted ‘your lot’ and got on with it, there were no labels.
This, from a generation that emigrated to the UK in the 60’s and 70’s, quickly assimilating and adopting new ways of being. Their support for creating equitable opportunities for neurodivergent individuals was heartening.
Celebrations like South Asian Heritage Month are crucial for spotlighting subjects we need to talk more about. By sharing our stories, and amplifying our voices, we can start to:
- Uncover why Asian pupils are only half as likely to be identified with autism as their white peers
- Address biases among experts that adversely impact identification, diagnosis, and support for neurodivergent South Asians
- Dispel myths and let others that are struggling, know they’re not alone
- Encourage collaboration and sharing of best practices, like making multilingual neurodiversity fact sheets found in some regional health authorities, available to all
Let’s keep talking and sharing our stories, to remove fear and stigma attached to neurodiversity in South Asian culture, so that every child, regardless of their background, gets the support they deserve.
Nalini Solanki, neuroinclusionatwork.com
