Caring and Neurodiversity: Andy's Story

17th March 2025

For Neurodiversity Celebration Week, we chatted with Andy, a neurodivergent carer, about what life’s like for him. Andy looks after both his parents while living with Asperger's, ADHD, and dyslexia. Here, he shares his story in his own words. 

Can you tell us a bit about your caring role? 

I’ve got a dual role. I look after both my mum and my dad. My dad’s got Alzheimer's, a heart condition, a form of cancer called Barrett’s disease, COPD, and severe asthma. My mum has skin cancer, osteoporosis, vertigo and tinnitus. I live with them, so that’s what I'm dealing with 24 hours a day, seven days a week. 

I do have a brother, but he’s got his own business, so he can only help if it’s really necessary. Like the other day, Mum rang him and said, 'Can you get over here and help Andy? Dad’s on the floor.' I told her to call for professionals, but she wasn’t having it. But when he got here, he told Mum, 'No, Andy’s right, we need to get the professionals in.' Sometimes, she won’t listen to me, but if my brother backs me up, she does. I’m lucky to have him and a few other family members who help when they can, but most of it falls on me. 

Can you tell us about your neurodivergence in your own words? 

I’ve got ADHD and Asperger’s, and I’m also dyslexic. People don’t realise dyslexia is part of the autism spectrum, but it is. I can lose my temper quickly if things don’t go right, but I know how to handle that. I just sit on it. But sometimes, I will resort to foul language, which people with my neurodivergence are more prone to doing. And dealing with professionals who don’t listen winds me up. I know what I’m talking about, but sometimes they treat me like I don’t. So I let them have it with both barrels, but I do it politely. 

How did you get your diagnosis, and how did it affect you? 

I only got diagnosed three years ago, at the age of 56, by my GP, but I’ve been autistic all my life. I happened to be in her office for something else, and she said, “Have you ever been tested for autism? There are certain things that I spot that are there when you're talking that are present in people with an autism spectrum issue.” I told her I was dyslexic, which I was diagnosed with at the age of 18 months, and she told me that was part of the autism spectrum. And then she said she’d get me tested for the others. And I came back with ADHD and Aspergers, and she said, ‘Well, how does that make you feel?’ I said, "Well, that gives me answers to how I've been all my life. I always felt like something was different about me, and now I could prove it. "

So I wanted to know about what I’m entitled to, but because of my age, I’m not entitled to anything. When you get to the age of 16, you can't be given medication because it doesn't work on your body anymore. 

How does being neurodivergent affect your experience as a carer? 

It makes some things harder. If things don’t go to plan, I get frustrated fast. And I've got no faith in the system. They don’t listen to carers as it is, and when you’re neurodivergent, it’s even worse. 
But when they realise I know my stuff—because I’ve got a medical background as a county staff officer in St John Ambulance—they change their tune. All of a sudden, I went from ‘just a carer’ to someone worth listening to. But we shouldn’t have to prove ourselves like that. We know our loved ones and their conditions better than anyone else. 

How have the Walk and Talks helped you? 

Well, if it wasn't for the Walk and Talk groups, I don't think I'd be here now. Either I'd be dead or I'd be in a mental institution, because the role I've got with having two of them is quite intense. So when I lost the walk-in talk group for those months, I didn't have an outlet to speak to others.  

It's not just about talking about what you do as a carer. It's evolved into more of a ‘talk about anything other than being a carer’ group. Being able to talk about anything lets you get your sanity back in your life. That may sound like a silly word to use, but it's true. It's the only way that us carers can have 'five minutes of sanity’ although in actual fact, you know, it's an hour and a half. 

I guess we do talk about our caring issues, too. We're helping one another in that respect as well. Even though not all of us deal with dementia issues, there are similarities within our caring roles that we can talk about and say, ‘We do this, we do that. How about trying this? How about trying that?’ which helps us as carers. 

What changes would make life better for neurodivergent carers? 

Being listened to by the authorities would help.  It’s the charities that help, not the system that’s meant to be there for us.