I know that this can be a sensitive subject but I wanted to open up a discussion around diagnosis. Last year, I wrote about our journey to get a diagnosis of autism for our daughter. Having spent a lot of time researching and learning about autism, I’ve become more alert to it in others. Both in children and adults. What I’ve noticed is that there can be a lot of fear around getting a diagnosis. It centres around a fear of being labelled or having a child labelled for life.

With our daughter, we chose not to talk to her about her full diagnosis until recently, not because we wanted to hide it but because she has other learning difficulties and so she had enough to cope with. But now that she does know, it doesn’t define her. She knows she’s loved and accepted in our family and with her friends. The diagnosis has helped her to understand why she finds certain things difficult, and why when I say she probably needs to get some space, it’s not me wanting to exclude her but trying to help her regulate her emotions. The diagnosis isn’t a negative thing but a positive one that helps her navigate a world that she doesn’t always understand and doesn’t always understand her.

Often for adults I know who receive a diagnosis or even choose to recognise autism in themselves, they find they have a ‘lightbulb moment’. They suddenly understand why they struggled at school or why they do things the way they do. It doesn’t necessarily change their lives, but it gives them a new level of self-awareness. It can also give language to their challenges and solutions to help overcome them.

Another thing I hear is, ‘We’re all somewhere on the spectrum, so what’s the point?’. I understand what they mean, but no, we’re not all somewhere on the spectrum and it’s kind of insulting to reduce the struggles of someone with autism to the same as everyone else has. What people mean when they say everyone is somewhere on the spectrum is that some people have sensory challenges or don’t like change. Neither of those things alone adds up to autism.

So what’s the answer? It starts with a consideration of the language we use around autism. One of the helpful and small changes is to stop thinking of autism as an entirely negative thing. Autism can be called ‘Neuro-diversity’, a different way of thinking. So either you are neuro-diverse or neuro-typical. Neither is better than the other, just different. Some of the most successful people in the world are neuro-diverse. I think the world needs neuro-diverse people to see things differently and innovate for the good of everyone.

What if you don’t want to get a diagnosis or it’s not actually possible to get one? Often it’s really hard to get a diagnosis, whether you want one or not. In that case, it’s worth understanding what autism is, there are different types of neurodiversity such as ADHD and Aspergers (not typically used as a diagnosis due negative connotations). There are lots of symptoms that make up neurodiversity but the main thing to know is that someone who these can live a full and happy life. It doesn’t mean they are less or unable to experience the full range of emotions, it doesn’t mean they don’t have empathy (as I’ve heard people sometimes say). Understanding Autism, whether you get a diagnosis or not, will help with yourself and your own children, it will also give you an empathy for others.

We’re now at a point where we believe one of our other children may be on the spectrum and so are living in this tension. Currently, we’re going to look at ways to support them as they face challenges at school and home, without a diagnosis. We want to be positive in our approach, not denying the challenge but facing it and looking for solutions.

My hope in writing this is that we all become more able to talk about autism (neuro-diversity), that we take the mystery out of it and restore hope to those who are autistic or have autistic children. Let’s embrace our diversity and celebrate it where we can.