26 March 2024

“There’s a level of ignorance, a not wanting to understand” – Raising Awareness of Acquired Brain Injury (ABI)

Young adults
An illustration of a man sitting at the edge of a canyon. The outline of the edge resembles a human face.

We spoke to Leo*, a young adult and research assistant who has an ABI, about his experiences of the criminal justice system and how practitioners can adapt their approach to better meet the needs of young adults who have a brain injury.

Leo has a diffuse axonal injury, which is a form of traumatic brain injury. ABI doesn’t always present with obvious indicators, leading to it being sometimes called a ‘hidden disability’. But it can cause significant challenges for young adults in contact with the criminal justice system.

“I had a motorbike accident where my head stopped, but my brain carried on going and shook itself inside my head. I spent two months in a coma. I spent eight months in hospital where I had to learn to walk, talk, eat, drink, and do everything again.

“It affects my speech very minimally but more so when I’m tired. It affects my balance, memory, complex planning, judgement. I have issues with filtering inappropriate comments. When I’m fatigued or when I’m tired from sleep deprivation, they’re all enhanced.

“When I’m very tired, I start speaking slow like I’m drunk. People look at me and, if I don’t know them, they’re like, ‘Have you had a drink?’ I’m like, ‘No, I’ve got a brain injury.’”

When Leo first encountered the criminal justice system in March 2020, he presented the officer with his Headway Brain Injury Identity Card. This identification card is designed to help police officers and staff more easily identify individuals with a brain injury and ensure that they receive an appropriate response and support.

“I pulled my card out. It says if you ever have something to do with the police, call this number. They asked me if I needed food or drink, and they came and checked on me.

There was a delay in interviewing Leo because the police had difficulty securing an Appropriate Adult to accompany him in the interview suite. Leo feels that his interactions with the police were encouraging overall. All the officers he encountered made adjustments to accommodate his needs. However, he recognises that not every young adult will have had an official diagnosis and therefore may not receive the support that the Headway card facilitated.

“People who don’t have that card might not get the right support and adaptations.”

Leo didn’t have any specific challenges navigating courts and sentencing, but his experiences with the probation service demonstrate how much work needs to be done to raise awareness of ABI and its impact on behaviour and cognitive function.

His first probation officer did not have a comprehensive understanding of ABI or how it affected Leo’s ability to easily attend in-person appointments – resulting in two missed sessions early on.

“One of my impairments is complex planning, so travelling on my own somewhere I’ve never been before can be really difficult. When I finally got to meet her, I said that I was so sorry about not being able to come to the past few times. I told her I’ve got a disability, and I know I look well, but this is how it affects me in my day-to-day life. My probation officer said she deemed the absence acceptable due to my disability.”

While it was positive that Leo’s disability was recognised and future appointments were carried out by telephone, he believes that there was a lack of curiosity around his disability and how it fully affected him.

“Without a shadow of a doubt, there’s a level of ignorance to it, a not wanting to understand, and on another level a sense of ‘I’m not sure if I fully believe you’, which was disappointing.”

Around this time, Leo needed an emergency operation. As a result, he was unable to attend a third appointment. Despite offering evidence to his probation officer, his third absence was deemed unacceptable, and he was recalled to court.

“I was found not guilty of the breach. But it was hard to understand how certain missed appointments can be deemed acceptable due to my disability but not at another point because I was having emergency surgery?”

A new probation officer was assigned Leo’s case. Leo attended his first meeting with his father in attendance as his Appropriate Adult.

“We were in the waiting room and the lady came to the top of the stairs. She didn’t even come down the stairs to greet us. She just shouted down and walked off into another room and we followed. She was very standoffish from the get-go.”

Leo started to explain his story to his new probation officer when his father interjected to offer some relevant information.

“He said,’ Hi, I’m Leo’s father and I’m here as his Appropriate Adult.’ Then she stopped him. She said, ‘Sorry, who are you? Why are you here?’ My dad explained, ‘My son has a brain injury, and I’m here as his legal and appropriate adult.’

“She was very antagonistic and said to my dad that you can’t do this, and you can’t be in here. My dad repeated that he needed to be there because I had a disability, and he was my advocate.

“The appointment was scary. It shook us how appallingly unprofessional it was.”

Aside from the probation officer’s shocking lack of professionalism, Leo felt that his disability and the support he required was being questioned by someone who had no knowledge of his case or his ABI.

“I told her that I sometimes struggle to find the words to express what I want to say. She said, ‘Really? I’m talking to you, and you seem like you can express yourself completely fine by yourself.’ It felt like she thought I was lying.

“We complained and ended up getting a formal apology from the CEO of the probation service and the probation officer concerned.”

Thankfully, Leo’s third probation officer was a much more supportive professional who took the time to get to know him and his situation. It was also his first experience of a probation officer who was invested in properly understanding his disability and how it affected him.

Leo believes that all probation officers should be mindful of how they interact with young adults with an ABI and take a more thoughtful and appropriate approach.

“Based on my experience, they need a little bit more empathy and understanding. It’s not empathy over what I’ve done wrong, but empathy and kindness in the situation and how my disability might prevent me from effectively engaging in my rehabilitation, which is the reason I am there.”

Leo has recently been working with the United Kingdom Acquired Brain Injury Forum (UKABIF) on a research project into the prevalence of ABI among young adults in the criminal justice system. He’s also helped to create a flyer to help young adults recognise whether they have an undiagnosed ABI and how to access support.

“I really cared about what was in the flyer, and I was really excited about all the people, like me, that it could help. At the same time, I feel it is also very important that the probation service and other professionals in the criminal justice system see it too. I mean the probation service, by golly, they need to see it. They need to get this information. They need to understand it.”

Moving forward, Leo wants to continue to use his lived experience to ensure that all young adults with an ABI receive the right support at the right time.

“Since my ABI, I have become a father to the most beautiful child, and I’ve got myself back on my feet. Looking ahead, I hope that the work that I am doing with UKABIF on projects like this can continue to help other ABI survivors in the criminal justice system to get their lives back on track.”

*Leo is a pseudonym used to protect the young adult’s identity