Is Neurodiversity the new black?
Many hundreds of thousands of black and other minority men, women and children happen to have a neurodiversity – defined as a variation in how the human brain processes information, thinks, learns, socialises, feels and behaves. Examples of neurodiversity are autism (Autistic Spectrum Condition), ADHD, Dyslexia and Tourette Syndrome.
Neurodiversity, like any diversity, is about difference; a brain wired differently that affects how the individual interacts and experiences the world. For some individuals, their neurodiversity may impair areas of their daily life, but their difference does not mean they are flawed.
My eyes were opened to the world of neurodivergence when my son was first excluded from primary school, aged six. His behaviour was unpredictable, challenging, but with hindsight, perfectly fitted the profile of autism, or ASD (Autistic Spectrum Disorder) and ADHD. He used to cover his ears when he heard loud music, crawl underneath tables, throw pencils around and occasionally lash out.
It emerged later that he was being bullied due to his difference – children with ‘difference’ are statistically at higher risk of bullying – but that’s another tale. Because his language skills were good and he was intelligent, the headteachers, class teachers and SENCOs (special educational needs co-ordinators) assumed that he was being deliberately ‘wilful’ and naughty. I regularly felt the weight of their disapproval for what they perceived was my bad parenting. It took five long years, hundreds of hours of personal research, weeks of meetings and many, many exclusions and ‘red cards’ before we finally received his diagnosis of autism and ADHD, aged nine. By which time, his self-esteem was on the floor.
Confusion and ignorance remain about autism and ADHD: they are not behaviour disorders, but they do affect behaviours. Not all neurodiverse kids have a learning disability, but some do. it depends on the individual. Autism and ADHD affects genders differently too. Getting to know the neurodiverse individual, is key to understanding the full scope of their personality. Their neurodiversity is integral to who they are, but they should not be defined by it. There are elements of autism that many autistic people have in common, but autism is a ‘spectrum’ condition, which means a diagnosis can be difficult to pinpoint, as it will present uniquely in each person.
On the theme of individuality, what does it mean to be black? The answer depends on where you’re at in your life, your upbringing and experiences. We share a commonality as black people, but our individual make-up is uniquely our own. We share the experience of discrimination with neurodiverse individuals. Being misunderstood, labelled or worst of all – people thinking they know who you are – based on an outdated patchwork of information pulled together by people who have never even met you!
Black families are significantly impacted by the behavioural aspect of their child’s neurodiversity: ‘double discrimination.’ Their child’s autistic/ADHD behaviour is misinterpreted as ‘bad behaviour.’ A diagnosis can take years because the medical and health professionals are distracted by your race, or your social-economic situation. Kids with special educational needs, in particular, autism and ADHD, are highly vulnerable to school exclusion. If we add ethnicity to the mix, children of black Caribbean heritage with autism or ADHD are at high risk of permanent exclusion from school.
The start of the decade has been strewn with drama, death and disease, as the world reels in response to the terrifying impact of a global pandemic. Many of us are looking forward to the change that will come when the world returns to ‘normal’. Some of you are salivating at the prospect of an indulgent meal at a special restaurant. Or you might be craving a full-on, balls out party! Or a long cuddle with a niece or nephew. Stuff normal. I’m looking forward to a seismic shift in awareness about neurodiversity in the black community. It’s time to talk about our autistic, ADHD kids without shame, we’ve carried forward enough shame to last a lifetime. We need to acknowledge that humans are born to be diverse: diversity in thought, regardless of skin colour, is what the world needs to evolve.
Some of us will raise children with unique, enquiring minds that bend the rules in challenging ways, affecting their behaviour. All children experience the challenges and opportunities of neurodiversity, why should black kids be any different?
For black families in lockdown with neurodiverse kids, you have been gifted with a unique opportunity to establish new ways of communicating with your child, understanding what the world looks like from their point of view. If you suspect your child’s behaviour may be due to undiagnosed autism or ADHD, gently enquire if they struggle at school (difficulty making friends, restricted interests or patterns of behaviour, etc.) Not all kids who have been excluded are autistic or ADHD, but when lockdown is over, it’s worth getting an appointment with your community paediatrician, or ask the school for a diagnostic assessment.
Emerging from lockdown with a better relationship with your child and a commitment to support their emotional, behavioural or neurological challenges is a positive outcome of this enforced isolation. Prioritising our young people’s well-being is critical, especially as the black community already experiences widespread structural discrimination. Equipping our kids with excellent life skills starts with strong family units, including those whose kids have additional needs. Sounds like a healthy prognosis.