Adjustments to talking therapies can help autistic children and adults, research shows

Simple adjustments to talking therapies can make a huge difference to autistic people, according to new research from The National Autistic Society and Mind.

The charities say 94% of autistic adults experienced anxiety and almost six in ten said this affected their ability to get on with life. Almost two in three autistic people have a clinical diagnosis of anxiety, and 83% experienced depression. The research found that autistic people were up to eight times more likely to report feeling often or always lonely compared to the general population.

The charities say the research was informed by the views of mental health professionals, over 1,500 autistic people and almost 2,000 family members.

Autism is not itself a mental health condition, however high numbers of autistic people suffer unnecessarily from poor mental health. In its 2019 survey, the National Autistic Society said more than three quarters (76%) of autistic adults reported 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. The National Autistic Society says this can have devastating consequences and even lead to crisis, with some autistic people ending up in mental health hospitals. They added that the coronavirus pandemic has only exacerbated the mental health crisis for autistic people.

Dr Deborah Spain, a cognitive behaviour therapist and researcher at King’s College London and the National Psychology Clinic, says many autistic people experience anxiety and low mood, often at the same time.

“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.”

The 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. They say too few studies have directly sought the views of autistic people to discuss what works for them, and that there is very little published evidence on how best to adapt practice for autistic adults and children, nor guidance for therapists.

Caroline Stevens, Chief Executive of the National Autistic Society, said their autistic supporters tell them 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.”

The charities are now recommending that all mental health professionals make the physical environment in both waiting and therapy rooms less overwhelming, as well as providing clear, concise, and specific information about what to expect from their service and sessions before therapy starts. They say professionals should be flexible and adapt their communication to the needs of the person they are supporting, as well as discussing adaptations and adjustments you can provide so the person being supporting is aware of what they can ask for.

“Alongside our campaigning, we and Mind want to help professionals delivering talking therapies to adapt their support, so it works better for autistic people,” Stevens said.

Lauren-Rochelle Fernandez, an autistic adult and founder of the ‘mask off’ campaign, who contributed to the research, said she struggled to get help her 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.”