As part of World Autism Acceptance Month 2025, we're sharing stories that take on harmful autism myths and stereotypes, encouraging people to see the real individuals instead.

Lucy gets tired of people assuming that her son, Eden, must have a special talent because he's autistic. Eden is 19, has a learning disability and needs 24-hour care. Here's Lucy and Eden's story.

When people think of autism, they think someone’s going to have an amazing talent or ability. That’s not the reality when someone has a learning disability.

Eden is my first child. I was 22 when I had him. Initially, I didn’t realise that anything was the matter. He didn’t talk and didn’t like busy environments, but he was the first boy in our family, so I just thought boys develop differently from girls.

When he was three, he wasn’t talking, so we took him to a health visitor. This escalated to multidisciplinary meetings with several healthcare professionals. When Eden was three and a half he was diagnosed with autism and a learning disability.

When Eden received his diagnosis, the doctor gave me a book and said, ‘Here you go. Here are the details of a support group. Off you go!’ I thought, ‘What the hell? Is that it?’ At first, I felt alone. I didn’t know anybody who had a child like mine. There wasn’t anybody that I could relate to. All my friends’ children at the time were neurotypical.

When it became apparent that he was autistic, people stopped visiting us. I sought out various support groups in Suffolk. You are in such a minority of the population that you need to find your community and get on with it. Because you have to.

Eden started in a special needs education school at three and a half and stayed there until recently. At his school, I found parents and people on a similar journey. Until then I had nobody to relate to. I had lived in a small village all my life, but I didn’t know anyone with a child like Eden. I finally had other people who understood and I could connect with. Whether it was over lack of sleep, meltdowns or potty training.

Eden struggles with anxiety. When he left the house, his behaviour would be unpredictable, and he would have meltdowns. When Eden felt overwhelmed, he would lie down on the floor in the supermarket and decide that he wasn’t going anywhere. Public meltdowns are OK when someone’s three, four and five, but as he got older people stared. You learn to ignore it and get a thick skin. The meltdowns were always difficult. Especially if you are on your own with him. You just have to wait for it to end and then move on.

When Eden was 10-12, I found myself limiting where we would go as a family, as I was worried he would have a meltdown. We didn’t want to put him through that. My husband and I would take turns to go out with our other son, so Eden could stay at home. We rarely went out as a family. We would restrict where we took Eden, limiting ourselves to visiting family who understood or essential doctors’ appointments. The only place he seemed happy was at home.

Eden struggles a lot. He has high levels of anxiety and finds transitioning from one space to another tough. We developed a routine for him moving from the house to the car, and if someone spoke to me and disrupted that routine we would have to start again. We went through a difficult stage of him getting stuck in the car. He wouldn’t get out.

We’ve since found some anxiety medication, which has helped him. But we don’t know the full impact of his mental health, as he can’t tell you how he’s feeling. Eden communicates using picture cards, or he will take you by the hand and lead you to something if he is after something specific.

When Eden was sixteen, I started working at his special education school as a teaching assistant. I started with a few hours during the day. When Eden moved into his own place last year, I could start a new full-time position as a family support worker. To me, working there feels like home. I support parents starting their journey with children with high support needs. I offer them advice and signpost them to support. Most importantly, I’m someone who understands them. I’ve learned a lot through raising Eden and can share my experience. It doesn’t feel like work to me. It’s a world that I’ve been in for so long, so it felt like a natural progression.

I try to get involved in research as much as possible, and I’m part of Autistica’s Insight Group. Sadly, there isn’t as much research to support autistic people with learning disabilities, but I help when I can. Recently, I’ve been involved with Autism Central, which offers peer support for families of autistic people. I’ve observed training sessions led by and for family members of autistic people and offer feedback on their sessions. It’s nice to get involved and help other families.

Although it’s challenging, it’s not all doom and gloom raising a child with a learning disability. You must look for the good parts and try not to focus on the bad.

I call Eden Peter Pan because he’s like the boy who never grows up. He may get older physically, but his mind is young. He’ll let you know if he doesn’t like you. He’ll let you know if he loves you. But he loves me the most. He’s so affectionate and cuddly. I wear false eyelashes and he loves the feeling of them tickling his face.

There’s not enough spoken about the learning disability side of autism. We need to shine a light on that. I would love to see more research into how people communicate with someone with a learning disability. Is there something better than the available systems? Can we help people to have their voices heard? The frustration that can be common in autistic people with learning disabilities often comes down to not having their voices heard. I’d like to see research change that.