What you need to know about us

A quick introduction to our world and what autism means for our family

I first wrote an ‘about us’ 8 years ago on my blog, Stories About Autism. It seems impossible that it can be that long ago, but I know it was because I just went back and re-read it. An instant reminder of just how much life has changed, and how little I knew about what was in store.

Let’s start with the basics that you need to know

I’m James, a single dad of two boys. Jude (15) and Tommy (12) and both of them are autistic. We live in Essex in the UK, and since the end of 2022, we’ve been living at my parents’ house so I can help care for my dad (but more on that later).

Eight years ago I began sharing stories from our lives online. First as a blog, then as posts on Facebook, and Instagram, and in more recent times I’ve tried to stay down with the kids and moved over to TikTok too. Initially, it was a way to show friends and family what life was like behind closed doors. What autism meant for Jude and Tommy, and us as a family. We were in a stage where life had become more challenging, and in turn more isolating. Jude and Tommy struggled with social occasions, so we stopped going. I could never find the words to explain when I did get to meet up with friends and family, so I started writing instead.

Which helped them understand what was going on for us, and get to know Jude and Tommy a little without ever spending time with them. Mission accomplished. What I didn’t realise was quite how much our stories would interest and resonate with others, nor how much it would help me, sharing what life was like for us. I learnt more about autism, made friends and connected with people all over the world, and discovered a passion inside me to help other families. Some incredible experiences and opportunities later, with a community that’s grown to hundreds of thousands of followers, I find myself coming full circle. Getting back to writing, like I did in the beginning on my blog, only here, on Substack instead.

Jude is 15 now. Somehow I’m a dad of a teenager. Of someone very close to adulthood (which scares the life out of me, and is something I’ll explore further in a future post). What can I tell you about Jude?

He’s the most gentle and beautiful soul, with a smile that captivates everyone that sees it. If you’re fortunate enough to spend time with him and become one of his trusted people, he will light up your world whenever you’re together.

He watches the same 2 cartoons every day that he’s been watching since he was 2 years old. Mickey Mouse Clubhouse and Special Agent Oso. I’m sure they could be my specialist topic if I ever went onto Mastermind, having seen each episode hundreds of times by now. He loves music, it’s on all day long when he’s at home, with a taste ranging from 60’s - now, helped by our long daily car drives listening to the radio. The car is one of only a few places where he feels safe and can relax fully.

Life has been tricky for Jude though throughout his 15 years. Jude is non-speaking, and his understanding of language is minimal. He’s very dependent on others and will need support for the rest of his life. The world can be an overwhelming, loud, and unpredictable place at times for Jude, and that can cause him a lot of distress. Ever since he was 4 years old, this has manifested itself in huge meltdowns. What began with excessive crying soon progressed to self-injurious behaviours. At their peak, they were the darkest years of my life. Seeing your child so distressed, repeatedly hurting themselves whilst whatever you do seems to make no difference, is the most heartbreaking thing I’ve ever experienced as a parent. Something I really wasn’t prepared for.

Luckily, as time has passed, things have improved for Jude. Largely, it’s been ever since we took the incredibly difficult decision to separate him and Tommy. Back in 2016 Charlotte and I had decided to separate. Our marriage was over. In doing so we were faced with an impossible dilemma. Tommy was a huge trigger for Jude’s meltdowns. Not intentionally, he never did anything to purposely disturb his brother, but Jude just couldn’t cope with being around him. Tommy was loud and unpredictable, everything Jude struggled with. So many meltdowns were triggered by a noise Tommy had made, that Jude was just unable to cope with.

By then we’d already been spending a lot of time 1-1 with them. One of us would be upstairs with one of the boys, one down with the other. One of us at the park with one, one at home with the other. It was the only way we’d found to reduce Jude’s meltdowns and stop him from hurting himself so much every single day. So we decided that we’d take it one step further. I’d have Tommy for set days every week whilst Charlotte had Jude, and every day or two we’d swap. Giving them the 1-1 care they both needed and the space Jude needed too.

And, it’s worked. Gradually Jude’s anxiety has decreased, and so have his meltdowns. His tolerance of other children has improved, and with the help of school, he and Tommy are starting to have more of a relationship. They do activities together at school, and we get them together for short periods outside of school too. I don’t expect that they’ll ever live together full-time, but a few days a week in the future doesn’t seem as out of reach as it once did.

Where Jude is laid back and quiet, Tommy is the complete opposite. One of the things I learnt early on from having two boys who are autistic, is when you’ve met one autistic person, you’ve met one autistic person. Tommy and Jude prove this to me every day!

Tommy is cheeky, mischievous, funny, and curious about everything around him. Very logical, Tommy loves learning, repetition, and completing tasks.

By the time he was 2, he was doing puzzles far beyond his years. Mixing multiple puzzles together, or building them with the picture side facing down to make them more difficult!

Whilst Tommy is still classed as non-speaking, he regularly makes word-like sounds, understands pretty much everything I say to him, and also communicates using an AAC device. He can handle being around other people much easier than Jude can, meaning he gets to experience much more of the world around us than his brother does. He loves going to the beach, the funfair, the farm, the park, the supermarket, enjoying most activities. His world is expanding more and more, with him becoming more confident with each positive experience.

Tommy is a stickler for routine though. Which is great when it comes to things such as his bedtime routine that we follow each night, but can also be very restrictive in other areas. Routines are reassuring but also prohibitive. It’s a tricky balance to get right.

As for me, life has changed dramatically over the last 7-8 years. Firstly I changed careers, needing to work more flexibly to be there for Jude and Tommy after school each day, and during the holidays. As many of you know, finding alternative childcare or holiday clubs that are right for our kids often just isn’t possible.

Initially, my parents were able to help, and I travelled to London a few days a week to work. Then, a combination of the boys’ needs increasing, and my parents’ health declining, meant it was no longer an option. My dad has had Parkinson’s for many years now, and then 3 years ago my mum was diagnosed with dementia. My world was spun upside down once more.

I knew it was coming, I’d been pushing for that diagnosis for a long time, and my care responsibilities towards them had already been increasing. For 18 months I was stretched further than I’d ever been before, trying to cope with 4 people’s contrasting needs. This all came to a head a year ago when my dad spent 6 weeks in hospital. I had no option but to put my mum into respite care, unable to look after her, help my dad recover, and juggle the school holidays.

It was a temporary solution that turned into a permanent one. My mum was happy and still is. Fate forced my hand into making a decision I probably should have made months before. With my dad needing more support than before his hospital stay, I adapted my parents’ house so I could move in with Tommy and Jude a few months later.

Which just about brings you up to speed. There’s lots more to talk about. Lot’s more to go in-depth about when it comes to Tommy and Jude, their past, present and future. More I will share about my own feelings, decisions I’ve had to make, and my parenting journey.

More about being a single parent, co-parenting, and being a sandwich carer for parents and kids at the same time. More about some of the exciting things I have coming up thanks to Stories About Autism and our community. A community that you’re now a part of.