Devastating News for the Autism Community

I’m not into politics.

And I say that because it’s not my area of expertise. I didn’t study it. I don’t want to spend my life watching the news and reading countless articles from different people talking about their own political position. It’s too much for a sensitive soul like me to be able to deal with. I know many people criticise me for not being fully informed. They ask, “How will you know what’s going on in the world if you don’t watch the news and read newspapers?”

My response is this: I have enough people in my community who are dedicated to that. They often tell me when there is something they think I should know. That’s really my approach.

Because I am somebody who feels everything, remembers everything I read, and is emotionally affected by watching humans behave badly, I have had to create boundaries around my own emotional and mental health. And that is how I’m able to serve and support as many people in my community as I do.

I stay in my lane.

My lane is helping people build unshakable and unstoppable self-confidence, tell their stories, and become better communicators. That is where I focus my energy. But today, I’m going to come out of my lane for a worthy cause. And I want to tell you a bit about my story, so you understand the context of why this has affected me so deeply. When my son Quincy was diagnosed with autism at two years old, I was told he would struggle for the rest of his life. I was told we should expect that he might need assisted living as he grew up.

I rejected everything I read. I started researching. I wanted to understand why people with autism are reported to experience such high levels of mental health challenges. I wanted to understand what my son might be up against. I read about the statistics. I read about depression and anxiety. I read about the fact that the World Health Organization reports that, globally, a young person dies by suicide every 40 seconds. And there I was, holding my tiny little baby, looking at him, knowing that statistics were telling me one story.

But I believed there had to be another story. So I decided to lean in.

I studied human behaviour, psychology, autism and neuroscience. I read as much as I could. I read The Reason I Jump because I wanted to understand autism from a non-verbal child’s point of view. I read about Temple Grandin.

I read Born on a Blue Day by Daniel Tammet, who is a savant. I read The Thinking Mom’s Revolution, which was a book that explored different perspectives around autism and vaccines. I read The Brain That Changes Itself because I wanted to understand neuroplasticity and how the brain can adapt and create new pathways.

I read Brené Brown’s The Gift of Imperfect Parenting. I read Brian Tracy’s How to Raise Happy, Healthy, Confident Kids. I read as many books on parenting as I possibly could. I was consuming information because I was trying to understand one thing: What does my son need from me to have the best possible chance in life?

I watched as many TED Talks as I could.

I watched Wendy Chung’s TED Talk about autism and genetics when it first came out. I studied neuroscience. I studied psychology. I studied human behaviour.

I basically consumed myself with understanding what my child was going to be up against and what I could do to support him.

I also invested in programmes and specialists.

We did Fast ForWord, which is a programme focused on cognitive reasoning and comprehension. We enrolled him into Arrowsmith, a programme in Canada focused on training the brain and creating new pathways to support processing. He worked with a neurofeedback specialist to help him develop more control over his brain activity. We looked at everything.

We used technology. We had a piano teacher from a very young age, who he is still with today. We changed aspects of his diet. We looked at nutrition. We explored different approaches because we were those parents who were determined to make sure our child had every opportunity possible. And through all of this, one thing became very clear.

The most important thing wasn’t just about changing what he could or couldn’t do. It was about making sure he knew who he was.

It was about building his confidence.

Because I started to realise that the world would constantly tell him what he couldn’t do. So my job was to make sure he knew what he could do. My job was to make sure he believed in himself.

That is where the Confidence Star came from. We created a star-shaped mirror where he would look at himself and say positive affirmations.

“I am somebody.”

“I am good enough.”

“I can do anything.”

“I like myself.”

Because I wanted him to build the strongest relationship with himself. We looked at how we spoke to him. We looked at how people around him communicated with him. We made sure his environment was filled with positive reinforcement. We didn’t want him constantly being criticised, compared or made to feel like he was behind. We wanted him to have the time and space to develop at his own pace. We focused on his strengths. We found what he loved. And one of those things was numbers. He could count in seven languages by the time he was seven.

He loved drawing and animation. So we focused on those things.

We kept reinforcing:

“You are great at this.”

“You are brilliant at this.”

Because we knew that he was aware of the things he found difficult. Things like putting his shoes on, opening his bag, and some basic tasks that other children his age could do easily. So we wanted him to have a foundation of knowing that struggling with something didn’t mean he wasn’t capable.

The biggest thing that helped me breathe was when we finally found the right school environment for Quincy.

That school changed everything for me. It was the first time I felt like I could breathe. That was in 2022. I remember thinking, “Oh my gosh, we’ve done it.” He could go to a mainstream school, with smaller classes, with support from people who believed in him as much as we did.

That moment was huge. But one of the biggest things that helped me breathe was discovering Jason Arday.

When I saw Jason’s story, I was overwhelmed. A Black man with autism and global developmental delay, who didn’t speak until he was 12, who didn’t read until he was 18, and who went on to become a professor at Cambridge University.

I literally threw a party. I sent the article to every single person I could find.

And I cried. I cried because the belief I had about what my child could become was reinforced by seeing someone who had already broken through those barriers. Finally, there was someone I could point parents towards. For years, when I was fighting for my child to be seen, supported and celebrated, I didn’t have that person. I was having to use neuroscience articles.

I was having to use research, find case studies explaining hyperlexia, echolalia.

I was having to explain how autistic brains can work differently. I was constantly trying to educate people so they could see the potential in my child.

I remember visiting 27 mainstream schools when Quincy was seven years old, trying to find one that would take him. I remember creating presentations for schools. I remember sitting there and almost marketing my own child.

“Look, he can speak Japanese.”

“Look, he can draw at this level.”

“Look, he can use this software.”

“Look at his memory.”

“Look at his strengths.”

I was trying to help people see what I saw. I was trying to help people understand that a diagnosis does not remove someone’s potential. And then Jason Arday became a public figure.

And finally, I had someone I could point towards. When parents said, “Oh, but he won’t be able to do this.”

“Autism means he won’t be able to do that.”

I could say: “Have you heard of Jason Arday?”

Because representation matters.

Seeing someone who has achieved something you thought was impossible changes what people believe is possible.

That is why seeing what has happened has affected me so deeply. Because for many families in the autism community, Jason Arday wasn’t just a professor.

He represented possibility, hope and a different story.

And I think about all the parents sitting at home right now who are holding their own little babies, just like I was, reading statistics, hearing what their child may never do, and desperately searching for someone who shows them that their child’s future can be bigger than the diagnosis.

The stories we tell about people shape what people believe is possible. When my son was diagnosed, I didn’t have enough stories of people like him achieving extraordinary things. So I made it my mission to create hope for other parents. That is why I created the Confidence Star. That is why I spent years speaking to parents, schools and communities about confidence, belief and seeing the person beyond the diagnosis. Because every child deserves to grow up knowing:

“I am somebody.”

“I am good enough.”

“I can do anything.”

“I like myself.”

I don’t know every detail, I will happily update this article when I know more information. But what I do know is that

for many of us, Jason Arday’s story gave hope.

And hope is powerful. Especially when you are a parent fighting every single day for your child to be seen, believed in and celebrated.