What does autism look like?
Raising a Mixed Race Autistic Son.
I am a black mother to three boys of dual ethnicity – black Ghanaian and white British. In 2017, my eldest son Walter (four at the time) was diagnosed with Autistic Spectrum Disorder (ASD) and receiving our son’s autism diagnosis was a life-changing moment. Whilst it provided us with an explanation for why he had been struggling socially and developmentally, it also installed panic, confusion and uncertainty for the road ahead. For some, receiving that important diagnosis can unlock access to the right support but for us and like many others, this is where the real struggle began.
“But he doesn’t look autistic”
“Oh! I’m sorry, I didn’t realize”
“I bet he’s great at Maths”
“But he’s so cute”
Are a few examples of comments I have received from people when I tell them my son Walter (7) is autistic. I think most of them mean well and “he doesn’t look autistic” is said with the intention to somehow make us feel better. But before we discuss what autism ‘looks’ like, let’s talk about what autism is. Autistic Spectrum Disorder (ASD) (The National Autistic Society, NAS) define autism as “a lifelong developmental disability which affects how people communicate and interact with the world”. The definition of autism has changed over the decades and could change in future years as we understand more. Autism is known as a “spectrum” disorder because there is wide variation in the type and severity of symptoms people experience.
What does autism look like? What do you say to someone who does not think your child looks autistic? Does autism have a look?
Yes, I suppose it does. It looks like soft afro hair and big beautiful brown eyes that sparkle in the light. It looks like a cheeky smile and a contagious belly laugh that instantly warms your heart. It is tall, strong and growing right before my eyes (and way too fast for my liking). It can also look frightened, confused and bothered by loud noises, or it can be quiet and intense whilst watching the same 30 second YouTube clip for the 47th time that day. It looks anxious and nervous when something is out of place or when things do not go exactly as planned. Autism can look like spinning and flapping or sitting quietly with an iPad. That is what Autism looks like to me. There is no one look to autism, and there is no one face of autism. Have you ever met to two ‘Jenny’s, Michelle’s or Sarah’s’ who look, think or feel the same? Of course not, so we should not expect all autistic people to look or act the same either. Walter is not the face of autism, but he is one of the many beautiful faces of autism.
Very few studies have addressed the role that racial and cultural identity may play in the experiences of autistic black and bi-racial children and their families. This means it can be even harder for autistic people in the black and minority ethnic community to get the support they need. We have had to use resistance, persistence and resilience for everything we have when it comes to giving Walter the best opportunities. Until the age of four and half Walter was completely non-verbal. At the age of six he finally got speech and language therapy which lasted two months before due to financial cuts in the system his therapy sessions concluded with no further help. In order to get help we made the decision to move Walter to a specialist school. For us as a family it was the best decision but for so many a choice of school let alone a specialist school is just not an option. Communication problems with professionals, lack of awareness and understanding of autism within the black community, language and cultural differences are just some of the major common barriers black autistic children and families face when accessing support services. Professionals do have a moral and ethical responsibility to confront their own racial biases and be willing to listen and communicate authentically with families. We need to understand the experiences of autistic people and families from different backgrounds and cultures and help create a society that works for all autistic people. For this to happen, we need decision makers, service providers and faith community groups to listen to autistic people and families from black and minority ethnic backgrounds and to produce culturally appropriate support.
In the days following George Floyd’s death for many mothers of black and biracial children across the country, it was an all-too-familiar refrain: raising black children means raising them in the spectre of fear. Now add in a disability and we are twice as fearful.
“Disabled” for so many correlates to something which is physical, obvious, apparent and easily reconciled by obvious observation. Conditions such as autism is not so obvious and can at times come with negative misconceptions, parent shaming, isolation and judgement – none of which are required or helpful. Imagine you were in a foreign, chaotic, overcrowded city at night, not understanding the language spoken, maybe only recognising a few words but not really comprehending situations taking place around you, wanting to express a need for help but not being able to. This experience may begin to help you relate to what a child with autism feels on an ordinary day. When I talk about autism, I am not only campaigning for awareness and equality but acceptance too. Disability is not inability and the easiest most impactful way of educating this is through books reading.
After my son’s diagnosis we struggled to find books where children like Walter could see themselves in the pages of books. They say “create the things you wish existed” so I created ‘Just Like Me’ a picture book series where at the heart of each story we explore and promote diversity, inclusiveness and kindness. There are more children’s books being sold in the UK than ever before – but how accurately do they represent the society we all live in? How many of your favourite picture books feature a disabled protagonist? And when I say the world disabled, I do not just refer to wheelchair bound but also include those with motor disabilities, visual disabilities and neuro diverse disabilities to name a few.
Books can serve as a first introduction to the outside world, and they should be as diverse as the people who read them. We cannot build an inclusive society when certain ethnicities, genders and disabilities are still represented as second class. Books have the power to change lives, so we owe it to young readers to show them reality in the books they are reading. If all children could see people who looked like them doing amazing things; could you imagine what that spark could do in their mind for their future? When we see people like ourselves in the media, including fiction, we get a glimpse of who we might become, and we feel validated.
Representation is powerful and matters. It matters to the children who do not see themselves in books and get the message in print that they are not worthy of a story and are unimportant in wider society. It matters to everyone affected by white privilege which is fuelled by generations of little boys growing up seeing a world which is catered for them and their interests. It matters to Black, Asian, Indigenous and other Minority Ethnic authors and illustrators who have stories to tell and images to share to the world. It matters to children who struggle with reading and feel excluded from the books they read. Today’s young generation are tomorrow’s musicians, teachers, politicians, artists, engineers, authors etc. We need to start young and ensure children accept disability. Adding diversity into their daily diet of stories will create a society where no one feels disadvantaged or restricted by their ethnicity, gender, background or disability. Where we celebrate differences and the uniqueness of all children.
Raising a child with Autism takes energy and patience. Some days I have neither. But miraculously you get through it. I know people mean well when they say things like “children with autism are only given to strong people”. But the truth is autistic children are given to ordinary, everyday people. Raising an autistic child does not take a special family. But it does make a family special.
If you’d like to find out more, or purchase the book mentioned in the article, got to www.justlikemebooks.co.uk
Written by: Pam Aculey
Follow Pam on Instagram at: @just_like_me_stories