Siobhan and Olivia

For a long time, Olivia*, aged 19, has felt different from everyone else. But it took years of pain for her to find out why, and to get her life on track.

 

Her mum, Siobhan*, has had to fight hard to get to this point: “Olivia is at university now and doing really well – but it almost wasn’t this way.  The Spring before she went to University the stress of exams, leaving school and the prospect of starting Uni led to a massive meltdown – she stayed in her room for five days barely eating and refusing to talk.

“Olivia was confused for a long time. She just wanted to know why she was different, and what was wrong with her. Child and Adolescent Mental Health Services (CAMHS) was just one obstacle after another. They didn’t keep us updated throughout the referral process, and we were refused access to the service twice. Luckily I was confident and persistent enough to keep pushing, but not everyone can do that.

A straight-A student and gifted musician, Olivia started to struggle when she was in fourth year at school. Siobhan noticed that she seemed different – more withdrawn and moody – but put it down to normal teenage behaviour.

Then one day Siobhan was called into school. Olivia had confided in her guidance teacher that she was self-harming.

Her GP agreed to refer Olivia to CAMHS, but said that because “lots of girls self-harm”, it would likely be rejected. It was. Instead Siobhan was referred to a charity; which she discovered didn’t actually service her local authority area. With nothing available to her, Siobhan was forced to pay for private counselling for Olivia – but appreciates that this isn’t an option for many.

Olivia found the counselling useful, but she was still struggling. Siobhan was being called to school regularly as Olivia was having emotional meltdowns. She was also binge drinking, smoking cannabis, and still self-harming.

“I remember reading a personal reflective essay Olivia had written for English. It absolutely terrified me. She had written about how different she felt and that she worried for her own sanity.

“It had been a year since our referral was rejected – we’d tried to go it alone and find other sources of support, but the situation was just getting worse. I asked the GP to re-refer her to CAMHS. This time we included a document from Olivia, in which she expressed her own feelings.

“Another rejection letter came through, and this time, I was furious. I called CAMHS and begged them to reconsider. I threatened to write to my MSP about it. Luckily the nurse I spoke to escalated the request, and this time Olivia was accepted and offered six cognitive behavioural therapy (CBT) sessions.

“But the course just wasn’t working for her. She saw through all of the questions they were asking her. When I spoke to CAMHS about this, they told me that CBT wouldn’t work for Olivia because it was likely that she had Asperger’s, but that they didn’t have anything else to offer her.”

Finally, Siobhan had a name for it. Olivia was referred to Autism Scotland who confirmed that she was a textbook case of a young woman with High Functioning Asperger’s.

“I didn’t know anything about Asperger’s, but now that I do, it’s obvious that all the signs were there. So why did CAMHS not tell us sooner, or help us to access support? I don’t think they would even have mentioned their suspicions about Asperger’s unless I had been pushing.  There was a sense from them that by passing exams and having friends she was already coping and didn’t really need to know her diagnosis.

“When she was eventually diagnosed with Asperger’s, it really helped her to understand that she is normal – just her own version of it; and she now has her own coping strategies and can mostly deal with what life throws at her.

“It was just such a huge relief for us all, especially Olivia. The self-harm stopped almost straight away. Luckily it was just in time, and she was able to pull things back and get herself to university.

“I just wish CAMHS hadn’t taken the self-harm at face value. If someone had spoken to her at the beginning, recognised that she was in severe emotional distress, triaged her to the right place… we could have all been saved two years of hell.”

 

*Not real names