Ask yourself – could this person be autistic?

My own son, and how he was perceived, by family and teachers alike, was the reason I pursued a career in clinical psychology. During his early school years in the late 1980's, he was labelled as 'disruptive' and 'naughty', and my parenting was continually questioned. I was told I wasn't implementing enough boundaries, and that there was not enough discipline in our household.

As he grew up, his autism became more apparent. His anxiety levels were sky high. He was diagnosed with ADHD at the age of 18 but did not receive his autism diagnosis until he was in his early thirties. His difficulties were not immediately obvious: he did not fit the 'typical' autistic picture. Tragically, he died at the age of 35 from undiagnosed pneumonia. We do not know whether or not he was able to explain the source of his pain to his GP and he was ultimately prescribed strong painkillers. His autism diagnosis had not been added to his medical records, even though his partner had personally handed his autism diagnostic report to their local surgery, and the GP claimed he had 'no idea' my son was autistic.

I started my career in 2002, working as lead clinician in one of the first truly multi-disciplinary NHS autism assessment teams in the country. At the time, we were commissioned to see 40 – 60 children per year. When discussing autism today, the term 'classic autism' has become controversial, but the children and young people we assessed at that time certainly fitted this picture, as most were non-speaking, and had comorbid learning difficulties. 

Over the years, understanding of the breadth and heterogenous nature of what is now referred to as the 'autism spectrum' grew. Our referral rates matched this growth, reaching around 360 per year when I moved on from the service in 2011.

Referral rates for autism assessments have continued to rise exponentially since then. Currently, in many areas, this has resulted in services becoming completely overwhelmed, with some young people facing waits of up to seven years. This is acknowledged as being completely unacceptable, but the inescapable fact is that demand vastly exceeds the capacity of services to carry out NICE compliant assessments. There has also been a growing number of adults seeking a diagnosis. Many of these are parents of autistic children recognise similarities in terms of their own experiences, and subsequently seek validation and support.

So, what happens to these young people and why is a diagnosis important?

Questioning the narrative

In 2011, I took on a new challenge and began working as a Consultant Clinical Psychologist in secure inpatient services, taking the lead for autism diagnosis and therapy in both low and medium secure settings. In 2013, the hospital changed its focus and became a tier four, low secure CAMHS service, which included a PICU. This was when my whole understanding and viewpoint about autism began to change.

Prior to this, I had not questioned the accepted narrative that autism predominantly affected males. This had been reinforced over the years in the autism diagnostic team, with the majority of our cases being male. We saw a few girls, but these either tended to be those with comorbid learning difficulties, or the occasional girl who was referred in her teens.

In the hospital though, it very quickly became clear that this narrative was not accurate. The wards were full of girls and young women who clearly presented with sensory processing issues, social communication difficulties and rigid thinking, all overshadowed by significant mental health challenges.

The distress experienced by these young women was painful to observe: their self-harm and suicidal ideation was severe and often life threatening. Their autism was often not recognised, and many were given a diagnosis of 'emerging emotionally unstable personality disorder'. This bothered me at multiple levels. First, a diagnosis of personality disorder is highly stigmatising and inherently gendered – at least 80 per cent of all those given this diagnosis are female. Second, it should not even be considered until at least the age of 18. Many of the girls given this label were 13 or 14-years-old, and this is before taking into account that many autistic girls are likely to be socially and emotionally much younger than their chronological age.

Anyone familiar with the workings of inpatient services will know that historically (and still today), they tend to work within a medical model, in that they are mostly led by psychiatry. Behaviour that is deemed to be 'challenging' is often managed with medication, rather than therapy. This medication often includes powerful antipsychotics and benzodiazepines, such as Lorazepam, both of which have strong sedative qualities. This meant that the young women on the wards were often not awake, or alert enough to engage in therapy. Many found that their sleep patterns were disrupted. It was simply not possible to support all patients within a standard working day.

In fact, during my time on the wards (even though there were three Consultant Psychiatrists and two staff grade doctors at the hospital), I was often the only qualified psychologist on the team. Additionally, there was no dedicated room for therapy, and there tended to be an emphasis on group rather than individual work, all of which did not suit the autistic girls on the ward. This is before even discussing the impact of the ward environment on an autistic person. The noise and bright lights cause stress. Young people are often placed in inpatient units many miles from their home, away from family and support networks. They have frequently experienced many years of bullying or feeling 'othered', or not accepted by their peers. They may have struggled at school and not have received the necessary academic and pastoral support.  Some present with clear features of trauma. On top of this, it is well known that many services struggle to recruit, train and retain competent and knowledgeable staff, particularly health care assistants. This leads to an over-use of agency or locum staff, who may not know the patients well and are often not well-trained in autism.

Frequently, this leads to an increase in self-harm and 'challenging' behaviour. There are well reported cases of young people being kept in seclusion suites for months on end, and being deemed 'too complex' to work with, which leads to extended periods of time in hospital and challenges in finding the right community services (or placement) when they are discharged.

My book includes personal accounts of both young people and their parents discussing the impact of this, and they clearly demonstrate how difficult this is. More worrying are the reports of autism diagnoses being removed, or challenged, when the young person is moved from one placement to another. Too often, an autism diagnosis is replaced by a diagnosis of emotionally unstable personality disorder.

Transforming care

So why does this matter? Basically, because this diagnosis stays on a person's medical record indefinitely, and can have a massive impact. Behaviour that is essentially autistic burnout, or dysregulation, is misunderstood. My book tells the stories of young mothers who have had their parenting questioned, to the extent that their children have been removed from their care. One young woman described the sensory experience of becoming a mother, together with the uncertainty and anxiety she felt when dealing with social workers and health visitors who questioned her ability to look after her daughter. Nobody working with her understood or acknowledged her autism. Other mothers were accused of fabricated or induced illness when seeking assessment for their own children, with this behaviour being interpreted as 'over-anxious' or 'attention seeking'.

Sadly, there are a growing number of cases which result in the young person taking their own life. A recent inquest held for a 19-year-old girl, who died whilst an inpatient, recorded a verdict of death by misadventure. The jury returned the following narrative:

It is the conclusion of the jury that systemic failures in health and social care led to a series of events which caused the deceased periods of dysregulation culminating in regular bouts of self-harm, which ultimately ended in her death by misadventure'.

The Transforming Care Agenda has led to a quality transformation programme for mental health, learning disability and autism. I was part of a Strategic Oversight Board chaired by the then Childrens' Commissioner, Anne Longfield, which scrutinised the progress of this programme. Many of the issues outlined above have been acknowledged in the course of this programme, and there are new care standards in preparation which will hopefully support autistic young people in inpatient services in a more appropriate and helpful way.

The same shift needs to also take place within the social care system.

Of course, misunderstanding about diagnoses of autism does not only affect girls and women. Boys and men can be equally impacted, particularly if they are from a black or ethnic minority background. Following my experience in secure adult services, I have often been commissioned to conduct assessments of men within the prison estate. These are often men who have been convicted and given indeterminate sentences for public protection (IPP's), and who frequently have not made any progress in the various courses they have attended. When assessed, they are clearly undiagnosed, and misunderstood autistic men, some of whom had spent 30-plus years of their lives in prison for crimes that should really have been viewed through an autistic lens.

In terms of misdiagnosis of BAME youth, after talking with black autistic parents, it became very clear that they too are often missed in terms of a diagnosis. Culturally they may present (and be expected to present) differently, and there is a huge lack of understanding of more 'diverse' autistic presentations.

Remain open minded

My motivation for the book came as I approach the end of a long and interesting career as a Clinical Psychologist. It also came from my own, very personal, experience of losing my autistic son, so the issue that affects me most personally is the failure to recognise comorbid autism and ADHD. But very many of the colleagues I have worked with over the years have a similar story to tell about a member of their own family. 

What would I hope my fellow psychologists will take from this? To remain open minded, throw away old fashioned ideas of autism and, when formulating a client's difficulties, ask yourself – could this person be autistic? It could save a life.

Autism, Missed and Misdiagnosed, Identifying, Understanding and Supporting Diverse Autistic Identities is published by Jessica Kingsley Publishers (2023). 

Watch this space for our January/February special guest edited issue, on neurodivergence.