5 December 2023

A system ill-equipped for neurodivergent young adults – “I’ve no idea how this person ended up where they are”

Young adults
A graphic of three people in profile with varied representations of brain function

Clare Hughes, Criminal Justice Coordinator at The National Autistic Society (NAS), believes the most pressing challenge neurodivergent young adults face today is accessing support from local health and social care services.

“Lots of young people are sitting on a waiting list for a diagnosis, or on a waiting list for Child and Adolescent Mental Health Services (CAMHS), or some sort of intervention. We’re leaving it longer and longer and longer before we’re able to respond.”

With their needs left unmet, neurodivergent young adults end up coming into contact with the criminal justice system – a system ill-equipped to provide the tailored support required.

“I’ve had lots of conversations with the police where they’re saying that they don’t have the training or the skills or the expertise to help these kids.

“That is a real worry because it’s not addressing the issue, which isn’t necessarily a criminal issue, but it will become one. That underlying issue is most often an unmet need, and we will never be able to address that through the criminal justice system. Nor should we.”

The National Autistic Society, and other voluntary sector organisations, recognise that the current situation will mean that many neurodivergent young adults are ending up in the system without an official diagnosis or a recognition of the additional support they require. That’s why working in partnership with HMPPS is vital, and the charity has been contracted to work with probation services in the North West, Yorkshire and Humber, and the South West.

“We provide training and facilitate reflective practice sessions so staff are able, as a group, to discuss the people they’ve worked with, what they’ve learned from those experiences, and things that they might be struggling with.”

The National Autistic Society also takes referrals and works directly with the probation officers and young adults. Working in this way helps cement the learnings from training into real-life practice.

“We are able to do direct pieces of work with the person on probation and the practitioner, which is really important because training only goes so far. That way, the practitioner gets an understanding of why we might go in with one idea and then totally switch it up and try something different to better suit that young adult’s needs.”

While Clare believes progress has been made in these areas, she is saddened that many neurodivergent young adults are coming through probation who simply shouldn’t be there in the first place.

“I’m finding this a really difficult process. Sometimes practitioners say to me, ‘I’ve got no idea how this person has ended up where they are. I can see that their needs are really significant, and I don’t think the criminal justice system is the right place for them.’”

Clare cites one particular case to illustrate how immensely challenging it can be for neurodivergent young adults to access support.

“James* is a young person who lived with his mum until he was about 19. His mum then said, ‘I just can’t do this anymore. I’m really struggling with his behaviour.’ She has done for a long time and hasn’t had any support from any services.”

James found school particularly challenging and, even though concerns were raised by staff about his behaviour, he didn’t receive an official diagnosis. Social care services assessed James as not requiring additional support, so he now lives on his own in a small flat.

“I wouldn’t even call it living. I would say he’s existing at the moment in a flat that is in a terrible state. Although he doesn’t live with his mum, she sees him every single day. He’s abusive to her as well and probation have said to her that they don’t think it’s wise for her to go to his flat.

“But James is her son at the end of the day, and he can’t look after himself. He can make toast and that is it, so she takes food for him each day. He can’t sort out his bills. He can’t manage day-to-day living. He lives in a room where the curtains are permanently drawn, and he just has a mattress on the floor.”

Even though James’s mental health is deteriorating, and he’s regularly self-harming, he still doesn’t meet the threshold for support.

“Mental health services have said he doesn’t meet the criteria. The worry that we’ve got is he’s on probation for another three months and he needs lots of support. He’s got two practitioners. He needs to be case managed by two people.”

Clare believes that James would meet the criteria for support from social services, but his anxiety can be triggered by face-to-face contact with new people, and social care services are unwilling to adapt their approach to meet his needs.

“He wants to have access to people socially, usually by phone, so he will ring people and he does want and need that. But he gets overwhelmed by face to face contact unless it’s somebody that he’s comfortable and familiar with, so fortunately he will let his two probation practitioners come to his home.”

James now requires such regular support that he calls his probation officers daily.

“They’ve managed it as best as they can, but this isn’t an appropriate way of dealing with this and what will happen when he’s no longer on probation?”

Clare believes that identifying neurodivergent young adults’ needs much earlier on will be key to diverting them from the justice system. This would require a multi-agency approach where different agencies, including partners from criminal justice, mental health, education and social care, come to the table to work together.

“It’s going to require people moving out of that mindset – that we’ve all been in for a long period of time – where we protect our own budget no matter what.

“The long-term gain would be that if we get in there early enough, we can reduce spending overall. For me, the argument that you need to be at crisis point before we do anything has never really made sense. To fix somebody at a point of crisis is always going to cost you more than it does when someone presents early on with more manageable needs that we can do something about.”

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