Autism has been in the spotlight recently – from the launch of the first autistic Barbie to growing frustration over long waits for diagnosis, and the latest Learning from Lives and Deaths (LeDer) report, which highlights the shockingly high number of autistic people experiencing mental ill-health.
We spoke with Dan Hall, Manager of our Lancashire Autism and Peer Self Advocacy Service (LAPSS), about the service’s work across Lancashire, and explored these headlines and the important conversations they have sparked within the team.
How long have you worked for Cloverleaf Advocacy?
I have worked for Cloverleaf for four and a half years, coming up to five years this June.
What does LAPSS do?
LAPSS delivers in-person and online peer support groups across Lancashire for autistic people, including those waiting for a diagnosis as well as those who already have one. We run a walking group and regular social meetups, where autistic people can build connections, find a sense of community and share experiences – something that can make a real and lasting difference to mental health and wellbeing.
We also help connect families with other families, and support people who are starting university by linking them with others who are beginning their studies too. Alongside this, we deliver a wide range of autism awareness and training sessions.
In addition, we offer one-to-one support through regular check-in phone calls and online conversations. For some people, this is their main point of contact and an important way of reducing isolation – simply having someone to talk to for half an hour or an hour each week can be incredibly valuable.
What has LAPSS been up to recently?
In January, we held a walk in Blackburn and travelled together to Rishton before walking back along the Leeds and Liverpool Canal. As well as giving people the chance to meet others, the trip helped build confidence around travelling independently, such as using buses and navigating unfamiliar routes.
Our February walk (weather permitting) will take place along the coast, from Lytham to St Annes.
Over the Christmas period, we organised a bowling trip and an extended peer support session in Preston, with board games and snacks. The session was deliberately calm and relaxed. Many autistic people find the festive period overwhelming due to increased social pressure and changes to routine, so we avoid focusing on Christmas itself and instead offer familiar activities, such as quizzes and regular social meetups, to provide a more comfortable and supportive environment.
Barbie launched its first autistic Barbie at the beginning of this year, what have people’s thoughts around it been?
While the Barbie is a positive step for autism awareness, it also risks stereotyping autistic people, because autism does not look the same for everyone. Although some autistic people use ear defenders, many prefer noise-cancelling headphones or discreet earplugs instead. However, if there were less stigma around wearing ear defenders, more people might feel comfortable using them.
It may have been more effective to release a generic “Autistic Barbie” with the message that you cannot always tell if someone is autistic. Mattel could then offer separate accessory packs, such as fidgets and ear defenders, so people could personalise their own Barbie to better reflect different autistic experiences.
Are there other media portrayals of autistic people that the group have spoken about?
We often speak about the TV show ‘The Good Doctor’ in our groups as a lot of our members really don’t like this portrayal of autism as they see it as stereotypical. The main character speaks in a certain way and his actions are robotic. It also reinforces the stereotype that autistic people are savants or geniuses. Many autistic people have a special interest, but it doesn’t make them a genius necessarily. It just means they are an expert in something they have researched thoroughly.
LAPSS is open to people waiting for an autism diagnosis. How are people finding the waiting times?
Our commissioner put a lot of money into our area and got the waiting list down to six months, but it has now risen again. We have people who have been waiting three years. Our local NHS area commissioned a partner to do diagnosis but then NHS England wouldn’t give them additional funding and directed them to ‘Right to Choose’ instead. This has caused issues where people no longer know if they are on the waiting list and often must start the process again. ADHD times are even worse. You must have an NHS diagnosis to receive ADHD medication, but the wait times are so long, and the NHS doesn’t recognise a private diagnosis.
Cloverleaf has recently conducted a survey into neurodivergence and health care settings, following a rise of health care complaints from autistic people. How do people in your group feel about health care settings?
This is something frequently discussed in LAPSS. While we have heard good stories, sadly they’re far outweighed by disappointment.
People are reluctant to go to their GP as they have not been listened to in the past. We know about instances where people have been struck off their GP register because they expressed frustration over something in a certain tone and the practice didn’t take a step back to consider their autism or measures to de-escalate.
We have also heard of GPs overpromising – we had one GP promise to call a patient once a week to see if they needed anything but did not have capacity to follow this through. It led to a breakdown in the relationship.
The recent LeDer report has highlighted many avoidable deaths of people with learning disabilities and autistic people in health care settings.
There is a large gap in the data between people with learning disabilities dying earlier and those in the autistic community. This could be because many autistic people don’t know they can request a LeDer review, which investigates the health and social care received by people aged 18 and above who have died to see what can be improved.
We’ve heard of one instance where a young woman who had been diagnosed with multiple mental health issues and autism died of malnutrition due to struggling with eating. She was always dismissed and told to eat more, but they wouldn’t take into account her sensory issues, which meant she was eating a very limited diet.
More health care checks need to be done for autistic people, like they do for people with a learning disability. They are trialling this across the country, but currently Lancashire is not part of the trial.
To learn more about LAPSS, visit:
Lancashire Autism Peer & Self Advocacy Service – Cloverleaf Advocacy
