Brighton autistic woman tells of her struggle for recognition
Esther* pauses thoughtfully before starting to speak. She’s forthcoming, engaging, making eye contact – traits which, for the past eight-and-a-half years, have been used against her by psychiatrists. “I don’t think anyone would believe my story, to be honest.”
Esther is autistic, with a diagnostic profile of Asperger syndrome. Despite having a number of diverse and independent reports confirming this, she says Sussex Partnership NHS Foundation Trust (SPFT) is refusing to acknowledge it – and denying her the validation and care pathway she is entitled to. Instead, it refers to two assessments carried out by its own staff – although there is no evidence either of these used any of the recommended clinical tests. For the last few years, she has been battling for recognition as an autistic adult in the eyes of the local NHS.
It all began in 2008. “I first realised that I fit the Asperger’s profile when I was looking up explanations online to find answers for one of our children’s behaviour, and that’s when it was like, “Oh my God.” It was this really weird moment where I thought, “That’s me”.” After repeated requests, Esther was referred to the Neurobehavioural Clinic in Elm Grove, Brighton. As a child, epileptic seizures had led to her having an EEG scan, which showed her brain as comparable to that of an autistic child. Add two autistic children of her own – a key indicator, as autism is currently considered a genetically heritable condition – and she was prepared to give ample evidence in favour of a positive identification.
But it didn’t come. “It made me very confused, because everything I’d read, I fitted it.” Unhappy with the result, Esther asked for a second opinion, which patients have a right to, although a Freedom of Information request revealed they are not routinely informed of this. While guidance from the National Institute for Health and Care Excellence (NICE) states a second opinion appointment must be conducted independently, Esther alleges hers was not only conducted at the same clinic, but with the psychiatrist from the first appointment sitting in. SPFT later denied his attendance in official documents.
“I went better-prepared for this one: I had done two or three online tests and I came out scoring that I very likely had Asperger’s. [But] they focused on other possibilities. Everything I said was put down to anxiety – even my sensory stuff.” A common feature of autism is being over- or under-sensitive to sensory input, such as sounds, lights or smells. “[The second psychiatrist] just dismissed everything. You’d think if someone is properly assessing you, they’re going to be analysing your answers, going into it in more depth.”
Diagnostic guidelines for autism in adults state that where possible, a relative who knew the patient in childhood should be interviewed. Esther says this wasn’t done, and even her husband, who took her to the appointments, was not interviewed. Instead, he was taken into a separate room and told Esther hadn’t been diagnosed again. “I basically went away feeling completely confused and invalidated, like I had no answer for the differences I’d felt in my life. I always felt different, and I can’t easily explain that because you just can’t.”
A spokesperson for Sussex Partnership NHS Foundation Trust said they could not comment on individual cases, but “diagnosing a mental health condition is a complex process that requires detailed assessment, often by a number of different professionals. We follow national guidance for diagnosis and it’s important to remember that this is regularly updated, allowing us to continually improve the way we diagnose and support people.”
Three years after her second failed diagnosis, she received a quality assurance questionnaire from the trust: “They obviously just did a mailshot – and I filled it in and went a bit to town.” This led to a complaint being lodged with PALS, the Patient Advisory Liaison Service, and Esther was told she would be seen at an autism clinic in Worthing the next January, in 2014. After about seven months, the complaint was abruptly shut down – and with it Esther’s hope of further NHS re-assessment. PALS cited “clinical opinion”, and said it would arrange a funding panel to discuss it.
Esther was undeterred. “In the meantime I had had a full private clinical assessment and it was extremely thorough. He did two all-morning interviews, and he interviewed my husband and my mum. He used eight different tests, and I had no mental ill health, I had no personality disorder – it’s literally Asperger’s.” She gave a copy of the resulting report to a nurse from the Neurobehavioural Clinic to present to the funding panel, but it didn’t reach them in time and an NHS re-assessment was refused.
The panel also wouldn’t acknowledge Esther’s private diagnosis – but that wasn’t the only thing she was left in the dark about. After making a Subject Access Request, a power given to members of the public by the Data Protection Act, she was given copies of internal emails sent between staff at the trust discussing her case. The Neurobehavioural Clinic nurse – who persisted in trying to convince Esther she had anxiety – featured heavily in the conversation.
“I was so horrified and upset at what they were saying. They said that I was crippled with anxiety, that I was a very very unwell woman. Now, I had been home-educating two children with special needs very successfully. They tried to question my parenting.”
Instead of receiving access to support under the Autism Act, the nurse from the Neurobehavioural Clinic put her onto the anti-anxiety medication sertraline. “It gave me really bad restless legs syndrome, some of my hair started falling out, I got these awful muscle pings all over my body. So they did that to me.”
Esther found an advocate at national charity Mind. In correspondence with the Neurobehavioural Clinic, they were told her private diagnosis was not being recognised as it would “undermine [the trust’s] own professional expertise”. Even the Parliamentary and Health Service Ombudsman failed to help, investigating only the funding panel despite evidence of the clinic’s failings. She believes the impact this has had on her is extensive; Esther now suffers from Ehlers-Danlos Syndrome, a connective tissue disorder, and Chronic Fatigue Syndrome, which can be brought on by stress and emotional trauma.
As well as exposing the trust on Twitter, where she uses the name AutisticJustice, Esther is considering writing a book about her experiences. It’s clear eight-and-a-half years of disappointment have not worn her down completely. “The disrespect they’ve treated me with is disgusting – and all to save face. They shouldn’t be allowed to do this, and if they’re doing it to me, how many others is it happening to?”
Sussex Partnership NHS Foundation Trust said: “We understand how frustrating and upsetting it can be for people hoping to receive a straightforward diagnosis, but our priority is the health and wellbeing of the local communities we serve and helping people get the right treatment and support for their needs.”
“If someone is unhappy with the result of their assessment, or any aspect of the treatment they receive from us, we encourage people to talk to our Patient Advice and Liaison Team (PALS), who will fully investigate and try to find a resolution. If they are not happy with the outcome there is a clear process in place for them to take their concerns to the Parliamentary and Health Service Ombudsman.”
*Esther’s name has been changed to protect her anonymity.