When Autistica’s report on early death in autism was mentioned on the radio in March this year, Karen – Charlie’s mother couldn’t believe what she was hearing. She thought her daughter, her family, had been terribly unlucky, but what she was hearing told her that suicide is happening to families across the UK, with autism being the common link. She quickly got in touch with us, desperate to share her story, desperate that Autistica continues to draw attention and take action over suicide in autism. This is her story.
Charlie was a very quiet, good little girl, but as she grew up and approached double figures I noticed she became quite withdrawn, and wasn’t at all happy. She felt like an outsider, but desperately wanted to be like everyone else. She started to self harm. Really, truly extreme self harm. I’d do what I could to hide sharp things but she would find anything that she could cut herself with. It was awful to see her so determinedly self-destruct and be so powerless to stop it.
We tried to help her ourselves at first, but knew she needed specialist help. She spent periods in psychiatric units – which was more aimed at containment rather than treatment and the doctors just weren’t able to help her in any way. I can see now, that’s because they were treating her mental health and ignoring her autism – so no wonder nothing worked.
There was one doctor who was brilliant and managed to get through to her. He saw immediately that her autism was stopping her from getting the help that she needed. He understood, but he had nothing to offer her. Over many years doctors offered completely inappropriate treatments – group talking therapy for example. For someone who cannot express their feelings, and totally lacks emotional understanding or social skills that was unbearable, and we knew it wouldn’t work.
Despite these battles and dark moments Charlie kept her (very literal!) sense of humour. She loved music. Music spoke to her in a way that people didn’t. Likewise animals – they loved unconditionally and didn’t mind her conforming to social norms and holding a conversation. These two passions led her to become an accomplished drummer and get a BTec in animal care and management. We were so proud. But the depression and anxiety never went away.
At that time she told me that she had been thinking about ending her life since she was thirteen. It was heartbreaking, but came as no surprise, we knew how unhappy she was, but no matter how much love and support and attention we gave, it didn’t help. She was at the centre of our family’s world, her grandparent’s, her sister’s, mine. We all rallied so hard for so long.
But in January this year, aged just 25, she did end her life. She saw no way out other than to kill herself. We were left devastated and completely empty.
She was the most loyal and loving sister, daughter and granddaughter. Before taking her life, she wrote a note to all of her closest family. There was nothing selfish about Charlie, and she would never have wanted to hurt or upset anyone. But obviously we were distraught.
Until I read in Autistica’s report about early death in autism. I thought Charlie’s experience was just a tragic one-off. But now I know there are thousands of young men and women going through the same battles that she did. We are failing all of them.
As a family we have all agreed that we must not let our deep grief get in the way of helping others like Charlie. Her death must not be in vain. That’s why we want to do all we can to help Autistica’s research into mental health in autism. We need to help families now before it’s too late.
Please join me in this vision of a future where autistic people have the treatments and services that they need to live their life to the full and be happy. We all deserve that.
You can listen to Ruby Wax telling Charlie’s story on Radio 4, as part of our #LittleLifesaver appeal this Sunday – 24 July at 7:55 am.