Zoe’s story contains references to suicide, misdiagnosis, and lack of support from health professionals. Please read with care.

Zoe was 25 when she took her own life. She was sectioned multiple times and her mental health deteriorated with each admission. The mental health team didn’t understand autism and misinterpreted her autistic traits as emotionally unstable personality disorder (EUPD, also known as borderline personality disorder). Many autistic women and people who are assigned female at birth are misdiagnosed with EUPD.

Jean, her mother, has agreed to share Zoe’s story, as part of our Break the Cycle campaign. She hopes that speaking out can help influence change and help other autistic people struggling to get the support they need.

My daughter Zoe was autistic. She had 17 sections and 37 admissions to hospital for her mental health. She was desperate for help but the mental health team at our local hospital didn’t understand autism and she ended up taking her life.

Despite Zoe already having an autism diagnosis, unbeknown to Zoe, the mental health services wrote EUPD on her notes without assessing her and then started treating her as if she had EUPD.

With every admission she had, she ended up being worse. She never got any aftercare. Eventually, Zoe developed complex PTSD because of her experiences with mental health services and felt the only way to escape the EUPD diagnosis was to die.

The coroner wrote on the inquest that the actions and inactions of the local NHS Trust contributed to her suicide, and asked the Trust to revisit the cases where they had diagnosed people with personality disorders to see if it might have been autism.

Zoe had struggled with her mental health since she was 13. When Zoe was 21, she attempted suicide for the first time. When she told her employer she was autistic, they weren’t very supportive, and rather than provide support, they sacked her. This led to an employment tribunal which Zoe found extremely difficult. After this, her mental health went from bad to worse.

After her first suicide attempt, she admitted herself to inpatient mental health care. As an autistic person, she struggled with uncertainty and lack of communication. When she got into the ward, they didn’t explain anything to her, like where the toilets were and other essential information. She ended up huddled in a corner, scared and uncertain.

The mental health team put EUPD on her notes and started to treat her as if she had it without ever assessing her.

Zoe found out, so challenged it. Within three weeks, she was fully assessed by a consultant who specialises in personality disorders. She told her she didn’t have a personality disorder but was autistic.

When Zoe asked for EUPD to be removed from her notes the hospital wouldn't remove it. With each interaction with the mental health team, she went further and further downhill.

As an autistic person, Zoe needed clear communication. She had Alexithymia, where someone struggles to describe her emotions.

One time, the crisis team visited her. They asked her a question, and she said, “I'm sorry I don't understand” because of how it was phrased. They repeated the same question in the same way, and she repeated that she didn’t understand.

So, they got up and left, saying “We're not going to play cryptic games!”

But she wasn’t playing games. She was trying to give them the answer they wanted, but she didn't understand what they were asking of her.

Nearly two years after the specialist had written to them saying she did not have EUPD, the hospital still wouldn’t remove this from Zoe’s notes.

She challenged the hospital, asking who diagnosed her, based on what diagnostic criteria, and whether they understood autism. Because if they didn't understand autism, they weren't qualified to assess her. She never got an answer.

I pursued this for two years after her death, and I never got any further. Because the truth is, she was never assessed. It should never have been on her notes. They didn't remove it when they had umpteen chances to take the pressure off Zoe.

During the inquest, the coroner initially kept saying Zoe was obsessed with this misdiagnosis. When the autism specialist heard this, she took a deep breath and said “No, she would have been deeply hurt.”

She put it into the context of children in a playground being teased. She said, that for most children, if they are teased, it goes straight over their heads. But to an autistic child being teased, it’s so damaging and hurtful because they can't understand why somebody is picking on them when they haven't done anything wrong.

After this, the coroner said, “I stand corrected, and I won't use that word again”. He didn't for the rest of the inquest.

Zoe's coroner went above and beyond. Not only did he ask for prevention of future deaths he also asked the Trust to go back to 134 cases of people the trust diagnosed with a personality disorder who had autism markers to see if they might have been misdiagnosed.

I just think the whole of society needs to have a better understanding of autism. I know things have moved forward in little steps, but it needs to move on much quicker and for there to be much more support. If there was better help and support, there wouldn't be as many autistic people having mental health issues.

Although Zoe is just another number of somebody who's passed, hopefully, all these numbers will build up into a picture where change will happen.