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People not Problems – are services working for people with autism?

Big Life Medical Director, Dr Louise Grant

I always think that for a lot of people with autism, life is what happens while they are waiting for a service.

Recently, at our Clinical Governance Board, we reviewed an incident concerning a client on the autism spectrum who didn’t get the service they needed. They had been referred to Big Life for guided self-help; however, after discussing their needs, we realised that they needed something different, so we tried to find them a more suitable service. This is common, regardless of the issue, people are referred onto a specialist autism service, but they may be few and far between and hard to access.

Usually everyone can get an assessment and diagnosis – if they wait long enough, play by the rules and go to appointments. But this can be a difficult process for people who find communication and social interaction difficult. It can even be a difficult process for us GPs and other services.  Many people fall through the net.

Where there isn’t a good pathway of services for people with autism, there is just a referral and long wait. All other issues are ignored while we wait for a diagnosis. The person may want support in other areas – housing, work, relationships, or mental health – but this is all put on hold awaiting the autism assessment.

But inevitably, these wide and varied issues impact on each other. A person with alcohol dependence may struggle to get to their autism assessment because of their alcohol use; however, they can’t access alcohol support because they are waiting for an autism diagnosis. It can become a vicious circle.

This is particularly problematic because adults with autism are four times more likely to experience depression and may self-medicate with alcohol and drugs to help them cope, leading to addictions. A 2016 study suggested that people with autism are more than twice as likely to become addicted to alcohol or other drugs as their peers (source).

It can be a bit of a postcode lottery too. When people get a diagnosis, some still just get left if they are not seen as ‘complex’ enough. The people who get a service are the ones who are seen to be ‘bothering’ other services – police, housing or social care – they are the ‘frequent flyers’ and ‘serial complainers’ in public service lingo. These people may get long term support. But if you look like you are coping, you just get your diagnosis, a letter to your GP, and off you go. This isn’t always the case, some areas are better than others, but it is a common experience.

Equally, what does having a diagnosis mean for someone’s life? Is it a good or a bad thing? If someone isn’t coping – they’re struggling financially, have insecure housing, and are known to services – it’s often attributed to them being on the autism spectrum. But just because they are labelled as being on the spectrum it doesn’t mean that everything is attributable to it and they can’t get support with other areas of their lives. It can become a damaging label.

I chatted to my colleague, Big Life’s chair, Edna Robinson, about this, as her daughter received a diagnosis of autism when she was in her 20s. She told me that, for her, having a diagnosis was a good thing, because things had got so bad by the time it happened.

It was a bit of a lightbulb moment when she understood how autism impacted on her daughter’s behaviour – particularly in the teenage years. It would have helped Edna to understand and support her better if she had known earlier.

Also, for Edna, it opened up some great networks. In Greater Manchester, people with autism are advocating and changing services themselves. Having a diagnosis helps some people connect with people who have similar experiences and build their confidence to ask for what they need.

One thing is clear; an over -simplistic interpretation of a label often stops people on the autistic spectrum getting the service they need. People living with autism may also be living in poverty and isolation, have addictions or mental health issues and face more barriers to accessing help than other people. They may struggle to conform with structured appointments and booking systems, or they may be excluded from mainstream services that could help them, as services only see the autism label and attribute all problems to it.

At Big Life, we don’t have all the answers, but we know where we need to start – by treating people as individuals and seeing them as people not problems.  For instance recently one of our services offered an earlier appointment to a client who is on the autistic spectrum without realising that moving the appointment would be distressing to them.  We listened to them and agreed to stick with the first appointment.

This is a message people with autism have been campaigning on for years. Big Life can do its part by sharing these messages and working with people on the autistic spectrum to influence the way we deliver our services in the places we work.

Jo’s story

Jo is currently accessing a social prescribing service, seeking to improve their wellbeing. They have been diagnosed with Autism, PTSD, anorexia and generalised social anxiety.

Before coming to our service they have been regularly hospitalised due to suicide attempts and their eating disorder. However, they don’t currently have any long-term support, despite being motivated and asking for support for the last 14 months.

Jo is really motivated and wants to engage, although it does take them a couple of sessions to be able to talk without their mum being there to help. It took until their third session for them to be able to speak to us, but since then they have increased their mental wellbeing (measured using a nationally recognised standard) and completed two out of three goals that they have set.

But that’s not been their experience of other services in the past. They have been bounced around and have found it difficult to access services. In recent years, Jo has been:

  • Referred to mental health teams several times by their GP and got to the assessment stage. Then they are told they need help from another service and put on another waiting list.
  • Told they need a referral from a mental health team to access an autism support group, but they have never been able to access a mental health service to get a referral.
  • Assessed by social services and told they would get a worker, but never contacted again. When chasing this up, they were told the referral has been lost.
  • Told by a Learning Difficulties team that they are “too high-functioning” for their service but they ‘definitely need support’. But they have not been told where to find it, or what this would look like.
  • Assessed by the Eating Disorder team and are on a six-month waiting list.
  • Seeking bereavement support but told this needs to be done by the autism support team, for which they need a referral from a mental health service.