I have learnt that being offered support doesn't necessarily mean that the support will be accessible to you.
There are lots of resources available to carers. Support groups, helplines and opportunities to talk to other people going through similar experiences can all be valuable. But they aren't necessarily right for everyone.
For me, the idea of joining a support group didn't feel comfortable, and I didn't want to use a telephone helpline. That doesn't mean I didn't need support. It meant that those particular forms of support didn't work for me.
For an autistic person, something being described as “support” doesn't automatically mean that it will feel supportive.
Sometimes the most helpful support is practical. It might be information in writing, somewhere quieter to wait or simply having more time to process information before being expected to respond. Sometimes it is somebody recognising that you are overwhelmed and asking what would make the situation easier.
I think there can be an assumption that if support is available, people will automatically be able to access it. But accessibility isn't just about whether something exists. It is also about whether it works for the person who needs it.
I have had to learn to recognise what kind of support actually helps me, rather than feeling guilty because I don't want to use the support that is being offered.
One of the most important things I have learnt is that I have to recognise my own needs too.
That can feel uncomfortable when someone you love is seriously unwell. There can be a feeling that you should be able to cope because they are the person who is ill, and you can feel guilty for having your own needs when somebody else seems to need you more.
I learnt this in quite a difficult way. There was a point when I went into an autistic crisis and ended up in hospital myself. I wasn't able to visit my dad or care for him in the way that I had been doing.
For a while, I had no choice but to put my own needs first. It made me realise something that I had been struggling to accept: I have to look after myself if I am going to be able to look after someone else.
You cannot keep giving when you have nothing left to give.
Since then, I have become more willing to recognise my boundaries and ask for what I need. I have found that people are often more understanding than I expect when I explain what would make a situation easier.
I started telling healthcare professionals that I was autistic. I had initially found this difficult because I didn't want to feel as though I was making things about me when my dad was the person who was unwell. But when I did explain, people were often kind and wanted to know what they could do to help. There were times when I was able to have meetings with one person rather than being in a busy room with lots of people.
That made a difference.
The things that have helped me are not complicated. They are often small adjustments that give me enough capacity to keep going. Movement, fresh air, ear defenders, fidget toys, quieter spaces, more time to process information and finding easier ways to communicate with family have all made a difference.
None of these things changed the situation. My dad was still unwell, the meetings were still difficult, and the uncertainty was still there.
But they changed how manageable the situation was for me.
Sometimes you cannot change what is happening, but you can change what you need around you to make it possible to keep going.
The biggest thing I would say is don't forget that you have needs too.
You don't stop being autistic because somebody you love has cancer. You don't stop needing sensory regulation, processing time or predictability, and you don't need to justify those needs just because somebody else is unwell.
If support groups or helplines don't feel right for you, that doesn't mean you don't deserve support. It means that form of support isn't accessible or appropriate for you.
For a long time, it was easy to put my own needs to one side because my dad's needs felt more important. But I have realised that doing that doesn't make me a better carer. It just means that eventually I have less capacity to keep going.
And that happened to me.
Looking after myself isn't separate from caring for my dad. It is part of how I have been able to pick myself back up and continue.
I have had to learn that putting my ear defenders on in a hospital isn't embarrassing. Going outside for ten minutes isn't selfish. Asking someone to explain something again isn't selfish. Needing time to process isn't selfish.
These are the things that allow me to stay present, think clearly and continue advocating for my dad.
And perhaps that is the message I would most want another neurodivergent carer to hear:
Your needs matter. Your way of processing information matters. Your sensory needs matter. And the things that make you different may be some of the things that make you a really good advocate for the person you love.
Cancer has changed my dad's life.
It has changed mine too.
But somewhere within all of the uncertainty, hospital corridors, difficult conversations and things I never expected to have to learn, I have discovered that being neurodivergent is not simply something I have to manage alongside caring.
Sometimes, it is part of what has helped me care.
And perhaps that is something we don't talk about enough.
