“From what I have seen of your son and the reports from other professionals over the years, I have come to a diagnosis for Ezekiel. Your son has ASD (Autism Spectrum Disorder)”. I smiled and nodded at the paediatrician and said simply “OK”.
It was OK because I had done my research on autism after this paediatrician mentioned autism six months previously. Because of the pandemic she had never met my son, who is four, face to face so couldn't say for sure, but I was expecting this verdict at his 6-month review. After I left the meeting, I felt calm and composed as I told my husband, family, and the nursery, relieved that at last Ezekiel would get extra support due to having a formal diagnosis.
Over the next few days, however, it hit me like a ton of bricks and the diagnosis I was initially so calm about led to the most difficult few months of my parenting journey so far. I became engulfed in a sea of grief and worry. I mourned the child I could have had, because let's be honest, you never expect these things to happen when you are pregnant and dreaming up a life for the child you are yet to meet.
I was sad that parenting was going to look different to what I had planned. And I was worried for my son’s future and played out many different scenarios in my head. And I had a lot of questions. Will he ever speak? Will he make friends? What if he gets picked on? Will he ever go to university, become independent and get a job? Will he ever experience love?
And I blamed myself, I thought it was because I had a difficult pregnancy and labour, or maybe I didn’t do enough with him as a baby. I wanted something or someone to blame but that’s not really helpful. Being a parent is hard enough. Being a parent to someone with additional needs is a whole different ball game. All of this took its toll andI fell into a deep depression.
Everything was so overwhelming, trying to juggle work with Ezekiel's extra appointments and researching everything out there on how to support my son. It got so much I had to quit my job.
During my research I also discovered that scientists from the Autism Research Centre at Cambridge University found that Black children had the highest rates of autism in the UK. I am a Black mother to a Black son, and our experiences of going through the system will differ because of this. The intersectionality of autism and race is a conversation that needs to be had. Too often when we’re presented with images of people with autism, they are pale and male, but the findings from the Cambridge study tell a different story. And these are the diagnosis we know about, and don’t take into account those still waiting for a diagnosis and support. The narrative that autism is a white middle-class male condition needs to change.
The National Autistic Society’s Make School Make Sense project in 2007 found that children with autism from Black communities experienced discrimination, and it identified that services were not meeting people’s cultural needs and that there was a lack of awareness of rights and services in some communities.
I know that in the Black community the level of understanding about autism is a lot lower and my Nigerian mother’s reaction to our diagnosis is a perfect example of that. It went something like this, “Ehn, God forbid, not my grandson, don't say that”. She has come a long way since then, after a lot of conversations and from doing her own research to understand ASD. But not everyone's experiences are like this.
Autism is still a taboo in our communities and there are various reasons for this. Religion, culture, feeling shame and barriers to accessing support all contribute, which in turn has a knock-on effect to getting a diagnosis and support. Without a diagnosis, meltdowns are frequently misinterpreted as aggressive and Black children who need extra support may be labelled as lazy or disruptive and we already know that Black pupils are more likely to face exclusions than white ones.
I am not going to pretend that it's all a walk in the park, but you must be your child's biggest advocate and arm yourself with knowledge. Trust your instincts too. I was often reassured when my son was very young that his speech delay was nothing to worry about, but in my heart, I knew there was something was different about him. To any parent concerned about their child's development, don't allow anyone to talk you out of seeking professional help.
I will try my best to listen to the voices in the autism community, especially the adults, because he will be an adult one day and they provide an insight I will never be able to. I also want to ensure that whenever I write about autism it will be positive and helpful. I'm not saying there won't be difficult times, but I want to move away from the negative stereotypes of autism.
Ezekiel is the same beautiful boy I gave birth to 4 years ago, and eventually the diagnosis carved out a new path for us as a family. A better way to explain and to understand my son better. He isn’t naughty, or stubborn, or spoiled. He is autistic and it is a neurological condition. Yes, he flaps his hands and grinds his teeth when he is excited and displays repetitive behaviours. Yes, he mostly likes to be by himself.
But like every child, he also has his strengths and talents too. His smile lights up the room, he gives the best hugs, he is so clever, and he has a phenomenal memory. We need to stop seeing autism as a problem that needs to be fixed. Autistic people can and do live fulfilling and meaningful lives. Autism is his superpower, and I wouldn't have him any other way.
Visit The National Autistic Society here
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