"Mencap was brilliant. They made me stronger, and they helped me fight. That was massive."

Susie’s son Reece (pictured) has a learning disability and autism . With Mencap’s help, Susie got him released from a locked psychiatric hospital where he should never have been detained in the first place. 

For years it was just me and Reece at home.

He’s a very gentle, soft soul, and even though he’s in a big body now, he needs security and a cuddle – Reece has always loved a cuddle! 

I can read Reece like a book. He doesn’t speak but I know straight away when he’s sad, frightened, or upset about someone speaking badly to him. I know the subtle signs of something building up. An early one is when he walks from one wall to another, touching each one.

A sign he’s becoming really distressed is when he bites his clothes. Seeing the signs he was giving me, I could act quickly to stop a meltdown by giving him love, making him feel safe, talking to him gently, or distracting him by going for a drive. He never needed medication to calm him, just compassion and understanding, and to be spoken to properly, nicely.  

But then we fell into a nightmare I didn’t know existed. A social worker insisted we go and have a look at a respite care provider, where a staff member said, ‘Wouldn’t you like to live here with us?’ Reece panicked at the thought of not being with me, which is when his distress started and his behaviour deteriorated.  

He was taken away from me by an out-of-hours duty social worker, and instead of them asking me to help them understand my son and make him feel safe, he was locked in a psychiatric hospital. It felt like he was being punished for having a learning disability and being autistic, punished for not being able to communicate, punished for being so vulnerable.  

When I went to visit Reece in the hospital, my heart broke. He’d had a nice free life going to college and to the park with me. Now he was locked away and over medicated. The only way he can communicate his feelings without words is showing them, and when he showed how much he was missing us, he’d be restrained with force and put into solitary confinement.  

You know how shell-shocked soldiers from the war looked? My boy looked like that. He was crushed. There are, it turns out, thousands of people with a learning disability and/or autism who are shut away like this even though they aren’t mentally ill and haven’t done anything wrong. They just have a disability and are misunderstood.  

I tried to tell them how to read the signs he was giving, that he was distressed and missing his mum and everything familiar, but I couldn’t get anyone to listen. The unit was so loud and chaotic which is overwhelming to someone with autism and it was making his behaviour worse. He was never like that before. 

I was banging my head against a wall and getting ill. Then I called Mencap’s Helpline - and that’s when things started to change.  

They were brilliant. They made me stronger, they helped me fight, with free advice about the law which Mencap told me was on Reece’s side, and free specialist legal support. Mencap got the hospital team to work with me so they could understand Reece better, and finally the hospital agreed to letting him come home after two awful years. That was massive.  

But we do have a long way to go. Reece is living in a supported flat that’s much better than hospital. With a care worker he takes the bus, goes shopping and to the park. But my soft, gentle soul of a son is so traumatised by what happened to him. The awful things he experienced all on his own have changed how he is.  

Mencap is still here supporting us. We’re now working to get his new community team to listen to what I know about Reece, so they can listen to him though he doesn’t speak, understand how he’s feeling, and care for and approach him in the best way. 

Thank you for taking a moment to read about my son Reece, it means a lot to me. 

Susie