This story is presented as written. As such, views expressed below are the personal opinion of the author. Health systems are complex places to navigate for everyone working and existing within them; stories are presented to help find ways forward – and to reduce shame, not shift it.

My daughter, May, was diagnosed autistic aged 8. She did ok in school with a few difficulties getting her into school. When COVID hit, her mental health seriously deteriorated, her school attendance plummeted and she spent most of her time in a room on her own.

Eventually May had a complete mental and physical breakdown. She stopped eating or sleeping,  totally shut herself away from the world. School referred to CAMHS. CAMHS refused her because she’s autistic. Had to contact Assembly member to interview after the second refusal. Also refused dietician for her ARFID (Avoidant/Restrictive Food Intake Disorder) because she “wasn’t malnourished enough.”

After waiting over a year we were assigned an “autism worker”, working to a very outdated medical model. The worker didn’t actually work with May. Just spoke to me, her also-autistic mother, about accepting May’s autism.

May was traumatised from lockdown, and the horrific way she was treated in school. The delay in CAMHS accepting her also meant that she was completely denied education, as the local authority insisted on CAMHS evidence. CAMHS did the report from the autism worker, which was inaccurate and deficit-based, medical model rubbish and then felt they could discharge her.

After I had made another complaint, a psychiatrist came to the house to see her. They said they’d begin working with her soon, and also get a sensory assessment done and seek advice from the dietician. [After six months] none of that happened.

My child has gone 2.5 years with no education, no health care and no safeguarding. She’s out of school, can’t attend any education settings. and [I am struggling financially] while still having to care for a child that doesn’t leave the house.

3 years ago I almost took my life as I felt it was the only way she would get help. I’m left with CPTSD (Complex post-traumatic stress) and debt from not working. I also have to watch my child continue to deteriorate. It’s negligent but no one cares or is held accountable.

They need neuro-affirming therapies for children, and training in neurodiversity from neurodiverse people. They should change settings so they don’t look like school buildings or hospitals.

Share your experiences

If you want to share your experiences around CAMHS, please consider completing our survey below.

We are gathering people’s stories of CAMHS to help us shape our calls for what needs to change, and to highlight the things that work well.

For more information, and to access the survey, click here.

If you are in a mental health crisis, please read this paragraph

If you have been affected by anything in this story and would like to talk to someone you can call Samaritans on 116 123. You can also call the national mental health support line for advice on 111 (press 2.)