What is your experience with neurodiversity?

My eldest son was diagnosed with ADHD and ASD, only recently, but at 18 months it was suggested by a paediatrician overseas that he was on the spectrum. I was in tears almost every day on the school run. It was so intense with meltdowns. Three years ago, we started protocols with functional medicine, including managing nutrition, and it’s made a real difference. It is important to emphasise that we are not looking for a cure, but with these strategies we are able to help him with the main struggles.

I’ve learned that It’s very unpredictable; what works one day doesn’t work the next. It takes constant communication to figure out how my son is reacting to things, and I’m always anticipating and making back up plans. When we go to parties or events, we arrive before everyone else so it’s quiet and the crowd builds around him, rather than arriving into a crowd. If we go to the park but it’s not open, we have a plan to go to another place.

What might others not know about your role as a caregiver?

The system makes parents fight for everything, for example we only just received an EHCP. We started to request diagnosis since he was in reception and now, he is in Year 3. My kid has gone through a substantial amount of unsupported mainstream schooling. You end up doing a lot of your own research. You learn from experience of course, and from other people’s journeys, and you learn from community groups and coffee mornings, but that is not always possible when you work full time.

How can we be more inclusive when we design research?

We need to remember that not everyone processes information in the same way. In your mind it might be simple, going from A to B. In certain brains, things don’t work like that. It might need to be graphic, it might be visual, or it might be with a story. Maybe some studies could get better results, more accurate results, if we did consider that. Maybe if you have someone on the spectrum checking the questionnaire, checking the key questions… Asking, ‘does this make sense to you?’ or ‘What is the meaning of this?’

It is also about helping them feel in control. Kids in general like to feel like they are in control, especially kids on the spectrum. They like to be able to make choices.

Finally, what would you want others to know about your experience?

It definitely makes you more tolerant in general. It’s very easy to judge when someone doesn’t do the thing you don’t expect. It makes us more tolerant; it makes us more human. You don’t want to bring your personal life to work, but it is important that people at work understand what you are going through, because you may have periods where you are less productive.