Where are all the Autistic black people?

Photo: Robert Lee 

I’ll put my hand up as one, but there must be others in Australia, right? I’m sure there are, but perhaps due to cultural reasons, racism, or a lack of understanding of how the healthcare system works, we don’t speak about it or get a diagnosis.  
 
Because African Autistic people are not seen in society and the media, I don’t see myself represented. The only African Australians I know with autism are myself and my beautiful son, Sammy.  
 
Because black people are not represented in the awareness raising of neurodiversity, it has been portrayed and perceived in a ‘white way’. I feel there is heightened danger for me if I display Autistic behaviour, such as having an Autistic meltdown compared to a white person. I am acutely aware that I would be labelled as an ‘angry black person’ or worse be racially profiled or injured by police. Our environment is not safe for black people with autism, but I am done with masking my disability just to stay safe. I am determined to raise our profile and help others understand us better, which will lead to a safer, more understanding world for all of us. 
 
Mine and my son’s diagnosis was the best thing to happen to both of us. It helped me put the supports in place that we both need to live comfortably in a neurotypical world. Our ADHD and autism diagnosis journeys started with a conversation with my son’s kindergarten teacher. Sammy’s teacher spotted that some of his behaviours were different to his peers and suggested I contact my GP for an assessment. As parents, we may feel scared or anxious to do this follow up as it can be daunting to be told your kid is not like other kids. However, I’m glad I took those steps and got an ADHD and autism diagnoses for Sammy.  
 
As an undiagnosed Autistic person myself, Sammy’s behaviour was similar to mine, so I didn’t question it. My job as a parent is to adapt to my child. But I was delighted that the kindergarten teachers picked it up and we received diagnoses. It meant we could put early intervention processes in place to offer him a better chance of developing coping strategies. 
 
I thought if Sammy is like me, then I must be like Sammy. Neither of us like strong smells and loud or repetitive noises; we avoid bright lights; and we must have our drinks freezing cold or piping hot, nothing in between. Then there were non-sensory things such as despising clutter; unclear plans; and being interrupted when completing a task or in hyperfocus mode. I thought I should also get assessed to see if I also had ADHD and/or autism.  

However, my journey was not as easy. I went through the frustrating experience of trying to get my diagnoses by a psychologist who had preconceptions of how someone with autism should live and act. She questioned how I could be Autistic when I had a double degree and worked as a high-profile advocate competent at public speaking. She clung to rigid beliefs on how someone with autism should present themselves, but I reminded her that I had to put in tremendous effort just to function the same way as others. For example, I set multiple reminders and alarms just to show up to an event. This could be a three-step process for one person but could be a 10 or 20-step process for me. But I was used to putting in that level of energy into everything I did, as tiring as it was.  
 
It took a lot of time and energy fighting to overcome the psychologist’s ingrained biases, but eventually I received the same diagnoses as my son. It was bittersweet: on one hand it proved that I was not just lazy, and I actually had to work three times as hard as others on tasks, but it also presented the risk of prejudice in the workplace or socially. 
 
After my son was diagnosed, I reached out to Amaze’s Autism Connect helpline for information that would help him, which they supplied. I felt seen, supported, and understood, so I went back to them for information on autism and black people and they were able to direct me to information on this subject as well. They gave me the language I needed, which empowered me to say, “I am an Autistic person, and this is what I need”. 
 
Now that I have diagnoses, the contacts, resources, and the necessary language, I can work on putting in place the things we need to live comfortably. As well as enjoying sensory things like weighted blankets and soft material, I ask people around me to give me notice about certain things like making sure they text me before calling me. I accept my limited and repetitive diet, my drinks at a certain temperature, and the way I make my bed. That’s me. I no longer beat myself up about being inflexible. I am who I am, and my self-love is growing every day. 
 
With the help of resources from Amaze, I now have the right support in place for our little family and feel ready to be part of the solution in dispelling the shame around conditions such as ADHD and autism. I want to raise awareness about them so others may get diagnosed and put measures in place to make their lives easier too. 
 
By using our words, we become the changemakers in the world, so I ask you, if it is safe to do so, and you are ready, please speak out about your experience with ADHD and autism – and dispel those myths. For our allies, I ask you to use your sphere of influence to raise awareness and ask your Autistic friends how you can help. 

 

Khadija Gbla is an award-winning human rights activist. You can find out more about Khadija at www.khadijagbla.com.au.  

 

Disclaimer: this article represents the perspective and opinions of the individual author and is not written by Amaze.