It is estimated that up to 27 per cent of autistic people experience anxiety and 23 per cent develop depression, compared to 5.9 per cent and 3.3 per cent in the wider population, according to NHS data.
But they are far less likely to receive talking therapies on the NHS. Those who do, will find talking therapies considerably less effective, according to the University College London (UCL) study of more than two million people who used the services, including 8,761 autistic adults.
The study found that autistic adults were 25 per cent less likely to see an improvement in their symptoms than the general population and 34 per cent more likely to experience a deterioration in symptoms.
However, the researchers said the therapies in their current form are still beneficial for many autistic people.
“Our analysis does suggest that therapies offered in primary care may be beneficial for autistic people who experience depression, anxiety or both,” said lead researcher Celine El Baou.
“However, we found that not only were outcomes worse for autistic people following therapy, but the autistic population was largely under-represented in services. While this study was unable to look at why this might be, we suspect it reflects the specific barriers that autistic people experience to access therapy and the lack of appropriate adaption for neurodiversity, including differences in thinking style, sensory sensitivities or the need for predictability.”
Cathie Long, who is autistic, said there “isn’t a one-size-fits-all” approach to therapy, adding that individual needs have to be taken into account.
“I’ve used NHS talking therapies in the past and the cognitive behavioural therapy really didn’t work for me. It was too cognitive,” the social worker told i.
The UCL research found that autistic adults are two to five times less likely than the general population to participate in NHS Talking Therapies for Anxiety, a free service that offers cognitive behavioural therapy (CBT), counselling and guided self-help, with sessions delivered either face-to-face individually, in groups or online. This service was formerly known as Improving Access to Psychological Therapies (IAPT).
These therapies are the standard treatment for depression and anxiety across the population, along with antidepressants.
It is not known whether drugs are less effective for autistic people than the general population, as therapies seem to be.
Ms El Baou said: “Autistic people may need more detailed and predictable information about what to expect with their treatment, who will provide it, and what kind of information will be expected of them. Because they process information differently, they may also benefit more from visual material than those who are not autistic, and less ‘on the spot’ verbal communication.
“The sensory environment may also affect how autistic people engage in therapy as they may be especially sensitive to noisy backgrounds, or the lighting of the rooms if therapy is provided in person, so this should be considered in offering services to autistic people.”
She is calling for mental healthcare services to be more accessible for autistic people by adapting them and making them easier to access.
Cathie Long said ‘cognitive behavioural therapy really didn’t work for me’ (Photo: Cathie Long)
‘Not geared to meet our needs’
“I think the main point would be that talking therapies are predominantly designed by neurotypical people for neurotypical people,” said Cathie Long, a social worker, from Cardigan in west Wales.
“And so unless people have a lot of experience of working with autistic people, they’re not geared to meet their needs.
“I know as an autistic person, I think differently, I probably respond differently to situations and I’ve had many, many experiences in my life where that’s been misinterpreted by people.
“I’ve used NHS talking therapies in the past and the cognitive behavioural therapy really didn’t work for me. It was too cognitive. I’m not saying it wouldn’t work for some autistic people. It just felt it involved a lot of thinking and I didn’t want to do a lot of thinking, it sort of got in the way.
“An autistic person, with high anxiety and maybe depression, takes time to trust the person so if somebody’s only going to be offered short term therapy for maybe six or possibly up to 12 sessions, it’s going to take time to trust that person and get used to them and then it’s going to end. The logic will be, ‘Well, why do that because it’s going to end?’
“That’s not to say it never works because I think these things can be helpful for some people but they’re not autistic-friendly. There isn’t a one-size-fits-all. It’s about looking at the individual and thinking about what they need.”
Autistic people are probably under-represented in mental healthcare for a variety of reasons but the stigma that surrounds it plays a key role, researchers argued.
Anoushka Pattenden, evidence and research manager at the National Autistic Society, which was not involved in the research, said: “Action needs to be taken now to make sure health services are just as effective for autistic people. It’s vital that mental health professionals receive training in identifying and understanding autism, are flexible in their approach, and include autistic people in discussions about the treatment and adjustments they need.”
Dr James Cusack, chief executive of research charity Autistica and an adviser to the Government on autism, said part of the problem is that, because of the greater difficulty accessing services, by the time many autistic people access talking therapies their depression and anxiety is so advanced that it is that much harder to treat.
Autism is characterised by specific experiences in social communication and interaction, alongside specialised interests, behaviours and/or sensory sensitivities.
Many autistic people require adjustments to be made to ensure equal access to healthcare, employment and local authority support.
It is estimated that between 1 and 3 per cent of the population in the UK are autistic, although a recent UCL study suggests the figure may be twice as high as previously thought.
The researchers pointed to a number of limitations in their study, including that the comparison group includes undiagnosed adult.
The NHS said:“Improving mental health outcomes for autistic people remains a priority, and we welcome these UCL findings that show our NHS Talking Therapies for depression and anxiety reduced symptoms for autistic adults.”
“There is more work to do to reduce outcome disparities for autistic people in Talking Therapies services, which is why we’re working with the National Autistic Society on workforce guidance to reduce barriers and increase access for autistic people – we encourage anyone who is struggling with their mental health to refer themselves to NHS Talking Therapies services online or by contacting their GP.”
Dr Conor Davidson, autism champion at the Royal College of Psychiatrists, said: “Talking therapies play a significant role in the care of autistic people who are struggling with anxiety and depression, particularly when autism-appropriate reasonable adjustments are made. This study should not prevent autistic people from seeking therapy or clinicians from offering it.
“While this research shows that on average autistic people didn’t benefit as much as others from talking therapies, it does not show whether reasonable adaptations were made to the therapy they received.”
Professor Kamila Hawthorne, chair of the Royal College of GPs, said: “Patients with autism and associated health conditions will have unique health needs, including when accessing care, and GPs and our teams will try, where possible, to address these.
“When it comes to talking therapies, and other community mental health services, in England, most are now accessed via self-referral – so it’s important that when these systems are designed, they also take into account the needs of autistic patients, including any potential barriers to them accessing care and services that could be beneficial to their health.
“Interventions, such as talking therapies and CBT have been shown to have benefit for some patients, and it’s important that no one feels unable to access this treatment.”
