New research and free guide: how to adapt mental health talking therapies for autistic children and adults
Published on 12 August 2021
The National Autistic Society and Mind are proud to launch a free good practice guide to help mental health professionals adapt talking therapies for autistic adults and children, alongside new research into autism and mental health. With funding from the Pears Foundation, the guide sets out how often simple adjustments and adaptations to talking therapies (which are used widely by the NHS to treat common mental health conditions) can make a huge difference to autistic people.
Research
The guide was informed by the views of mental health professionals, over 1,500 autistic people and almost 2,000 family members. In our Mental Health Survey, carried out in October and November 2020, we found:
- 94% of autistic adults experienced anxiety; almost six in ten said this affected their ability to get on with life
- almost two in three have a clinical diagnosis of anxiety
- 83% experienced depression
- eight times as many autistic people report feeling often or always lonely compared to the general population.
Autism is not a mental health condition. But high numbers of autistic people suffer unnecessarily from poor mental health and our autistic supporters have told us it’s their top priority. In our 2019 survey, 76% of autistic adults report reaching out for mental health support in the preceding five years.
Higher rates of anxiety and depression in autistic people have been associated with lower life satisfaction, greater social difficulties, loneliness and insomnia. This can have devastating consequences and even lead to crisis, with some autistic people ending up in mental health hospitals. The coronavirus pandemic has only exacerbated the mental health crisis for autistic people.
Our research suggests that this situation is driven by insufficient social care and mental health support in the community, as well as a lack of understanding of autism and how to adapt and adjust support to meet autistic people’s needs. Few studies have directly sought the views of autistic people to discuss what works for them. And there is very little published evidence on how best to adapt practice for autistic adults and children, nor guidance for therapists.
Our guide
Alongside Mind, we want to change this. Learning from autistic people and family members, we identified the biggest barriers to accessing talking therapy, as well as what support works best. We then worked with mental health professionals to understand what is practical and achievable. We also discovered a lot of examples of good practice that therapists are already using to deliver positive outcomes.
Top recommendations for professionals
- Improve autism understanding for all staff through training.
- Make the physical environment in both waiting and therapy rooms less overwhelming.
- Provide clear, concise and specific information about what to expect from your service and sessions before therapy starts.
- Be flexible and adapt your communication to the needs of the person you’re supporting.
- Together discuss adaptations and adjustments you can provide so the person you’re supporting is aware of what they can ask for.
These are just a few overarching recommendations, for more details, read our free guide.
Reaction
Caroline Stevens, Chief Executive of the National Autistic Society, said: "Our autistic supporters tell us that their top priority is improving mental health support.
“In 2019, 76% of autistic adults told us they’d reached out for mental health support in the preceding five years - but only 14% said there were enough services in their area to meet their needs. This is unacceptable. It’s devastating for autistic people and their families, and one of the reasons for the national scandal of autistic people being stuck in mental health hospitals.
“Alongside our campaigning, we and Mind want to help professionals delivering talking therapies to adapt their support, so it works better for autistic people. Thanks to funding from the Pears Foundation, we’ve produced this guide. We encourage everyone working in mental health to read it and start thinking about how you can adapt your practice for autistic people.
“Training and small changes, like allowing autistic people who need it extra time to process and answer questions, can be transformative. Find out more and download the free guide on our website: autism.org.uk.”
Kerry McLeod, Head of Information Content at Mind, said: "We're proud to be part of this project and hope it makes a genuine difference to autistic children and adults.
"Many autistic people with mental health problems struggle to get appropriate support - and the pandemic has made things even harder. At Mind, we fight to make sure everyone with a mental health problem has access to the help they need so we were happy to contribute to this work.
"Campaigning for high quality, timely mental health treatment for everyone who needs it is central to our work. We hope this guide goes some way to helping autistic people affected by mental health problems to access the support they need and deserve."
Lauren-Rochelle Fernandez, autistic adult and founder of “mask off” campaign who contributed to the research, said: “I have struggled to get help my whole life. After I was diagnosed with autism and ADHD, I reached out to a number of different services but as a black autistic woman I found myself often misjudged, mistreated and misunderstood.
“These experiences meant I developed a deep mistrust of mental health professionals, until I met my current counsellor. She is flexible to my needs. For example, I really struggled at first doing sessions on the phone, I told her I want counselling I really do, I have been begging for it for so long but I just can’t carry on using the phone, instantly she asked if it would suit me to engage in video therapy. This was so much better. Had she not done that I would not have been able to carry on.
“She takes things at my pace, listens to me and tries to genuinely understand where I am coming from. I can’t tell you the difference it makes. I think she is amazing and I look forward to therapy now which I never thought I would say.”
Dr. Deborah Spain, a cognitive behaviour therapist and researcher at King’s College London and the National Psychology Clinic who contributed to the research, comments: “Many autistic people experience anxiety and low mood; often, these co-occur. Short to medium term evidence-based talking therapies, such as cognitive behaviour therapy, can be very effective. But every autistic person is different and we know that therapy may need adaptation, to address social communication and sensory preferences and needs, information processing styles and difficulties with describing internal states.
“Without doing so, autistic children and adults can understandably find therapy difficult to access and of limited value. This is important, because some autistic people walk away from poorly delivered therapy thinking they have failed, done something wrong, cannot be helped or that therapy does not work. They may experience a sense of shame, or guilt, and feel more hopeless about the future.
“Small specific changes to the structure and content of therapy can make a big difference. Taking the time to get to know each autistic person as an individual, and validating their preferences, needs, thoughts and experiences, is crucial. This can enhance engagement, but also, their confidence to talk about difficult topics and try out new ways of coping with distressing situations. Most importantly, a positive experience of therapy in the here-and-now means an autistic person is more likely to seek support, if needed, in the future.”
Further information
- Download our free good practice guide for professionals delivering talking therapies for autistic adults and children.
- If you’re autistic or a parent looking for information and advice about autism and mental health, check out our information and guidance.
- For advice and support about mental health hospitals in England, contact our autism inpatient mental health casework service.