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.

Navigating neurodiversity as a caregiver

Her daughter was diagnosed with severe autism at a young age. She shared, “At the start of the journey it’s really hard to deal with,” but whilst it was initially challenging to understand her daughter’s needs, the diagnosis provided clarity and direction.

She was fortunate to find a network of local caregivers in her area – people who understood the realities of caregiving. This network gave her a space to share her experiences, and also to learn from others who were in different situations.

From her perspective, when people think of autistic individuals, they often imagine those who are more outspoken or visible on social media. Sometimes these individuals describe autism as a ‘superpower’ and not challenging when in fact, it can be. Many people with severe autism express themselves differently. It's important to remember that autism is a spectrum and there are individuals with a range of abilities and challenges.

Workplace support that makes a difference

In the workplace, she is supported by being able to work flexible hours, which sometimes means leaving work earlier or finding alternative solutions for work trips. This flexibility is important, as it allows her to maintain a routine for her daughter, which provides stability.

When asked what workplaces could do differently to be more supportive, she answered, “By not making assumptions.” People often assume she has a neurotypical child, which can lead to misunderstandings. To avoid this, she mentions her daughter's condition early in conversations to build understanding.

How we can make people more comfortable in the workplace.

Encouraging openness about being neurodivergent or being a carer can foster psychological safety. By being transparent, she was able to help a colleague who was starting a similar journey as a carer, offering support and guidance.

Even in an environment where there may not be many neurodiverse colleagues or carers for neurodiverse individuals, raising awareness and creating a supportive atmosphere can make a significant difference in creating a positive and inclusive workplace