CBT for Autism and mental health

On World Mental Health Day 2019, Impossible Mental Health’s founder, Cognitive Behavioural Therapist Deborah Nelson attended the Autism and Mental Health Conference in Leeds, hosted by the National Autistic Society.

As you’ll know from our first blog post, Deborah’s journey to working in mental health and launching her own practice has been a very personal one. As a parent of two autistic young people, she has personal experience of the challenges and barriers often faced by autistic people and it has fired her passion to use her skills and experience to help.

It was an enlightening, emotional and inspirational day for Deborah, who shares her experience and key learnings from the conference in the blog post below.

For me, Impossible Mental Health is all about challenging our perceptions about mental health, challenging the way we do things, and challenging how we approach people who require support, and this is an idea that resounded throughout this conference.

There were some really inspirational speakers. Alexis Quinn - who was recently on BBC News sharing her experience - was a high achieving autistic woman who shared the details of her harrowing experience of long-term hospitalisation.

Alexis was a swimmer and a teacher; shortly after having her first child, Alexis’ brother died. As well as being a new mum and struggling to process the emotions around her grief, suddenly the carefully constructed routines which allowed her to successfully live her life were no longer in place.

Pic: National Autistic Society

The crisis team were contacted as she was perceived to be behaving peculiarly. What began as a short term intervention under the mental health act led to three and a half years in hospital.

This would be difficult enough for anyone to deal with, but in this confined and institutional environment, Alexis experienced constant sensory and emotional overload, with no freedom to escape or retreat. If it all became too much, or something upset her daily routine, Alexis would often erupt, having no other way to express that she was in distress.

Staff would then restrain her, only compounding her overwhelm. This is, sadly, not a story which is unknown, but it is unusual to get to hear it from the point of view of the autistic person and I found it fascinating and thought-provoking.

Exploring appropriate interventions

Alexis asserts that what she really needed was occupational therapy and speech and language therapy to help her form healthy routines and communicate effectively to the people in her life - which she has costed at a around of £5,000. Instead, she got three and a half years of stressful hospitalisation with an estimated cost of £2m!

In the end, Alexis actually had to run away from the hospital (something she wouldn’t recommend!) and now lives in Nigeria where she has sourced and self-funded her own treatment.

It was interesting for me to note that Alexis felt Dialectical Behavioural Therapy (DBT) was the first thing that helped her. I am trained in this form of therapy and believe DBT strategies together with CBT techniques could be powerful in improving mental health outcomes for autistic people.

The autistic response isn’t wrong and doesn’t need fixed

Alexis made the point that in the neurotypical world, we are always looking for a pathology, or to ‘fix’ autistic people. At Impossible Mental Health, we advocate for a more bespoke arrangement in supporting someone who is autistic, emphasising that the autistic response is not ‘wrong’ and we don’t need to fix it.

We want to equip autistic people with a toolbox of skills to deal with different situations, so that if a situation comes up that is different, that they’re unfamiliar with - how can they learn about it without it being overwhelming or unmanageable?

A prism of mastery is an individual’s personal skill set - the tools they have to live a happy life, essentially. They include things like executive function (our ability to plan, concentrate and regulate our responses) verbal communication, non-verbal communication, social awareness, sensory integration and cognition (our ability to learn and understand).

Rather than pointing out which of those skills someone is missing, it is more positive to start with the skills they do have and use them as building blocks to develop the others.

Clear and direct communication supports navigation of the neurotypical world

Another point Alexis made, and it is one I have encountered in the training I have done on autism and CBT, is to look at the wording or terminology used when speaking to someone who is autistic.

In an assessment appointment with a neurotypical person I might open by saying something like, “So, what brings you here today?”, intending this as an invitation to tell me why they have come to therapy.

An autistic person may see this question as irrelevant or confusing - they might tell me they got a taxi or took the bus because that’s literally what brought them here today. It reinforced my determination to use the most direct language possible when speaking to an autistic client.

Danielle Rudd was another fantastic speaker - she is a social worker, PhD student and autistic person. She put across some excellent points about the ‘invisible’ barriers between an autistic person when they need to access healthcare. Arranging a doctor’s appointment is a multi-step process which for neurotypical people can appear fairly simple. However, for the autistic person, navigating the many variables - available dates and times, planning travel to and from the surgery, knowing where to go and what to do when you get there - can be daunting to the point of overwhelm.

A perfect storm for autism and mental health?

We need to be aware that there is currently the potential for a perfect storm brewing for people with poor mental health in general, but in particular for autistic people. We’re making it difficult for them to access services and we need to realise that our interventions can be harmful, despite our best intentions.

As Alexis said, she wasn’t born disabled, but the environment she lived in disabled her.

Instead of focusing on what someone can’t do, we need to focus on what an individual can do and build on that, before looking at what might be ‘missing’ or needing ‘fixed’ for them.

There were some statistics which, although I work in the field, I found quite shocking. As a parent of two young people with an autism spectrum disorder, I think these figures also hit home in a very personal way:

Black and white thinking can compound mental health issues for the adult on the autism spectrum - believing that it isn’t normal to feel as bad as they do, they don’t have the skills to fix it and therefore feel it cannot be fixed.

For mental health in general, there is still a pervading myth of “stop worrying, get over it”. Nobody can change an emotion through willpower; they can, however, be changed - over a period of time.

Although the stats were sobering and it was an emotional day, I left feeling really excited for the future of Impossible Mental Health. Much of what I heard consolidates what we know and what we have been working towards and has left me feeling even more confident to move forward with the creative approach we have been developing to support those who are autistic.

The conference reinforced that there’s a need for alternative ways of looking at autism and we look forward to developing ever more innovative and sensitive ways to deliver therapy and support.

It has also galvanised our deeply held belief that autistic people should have the final say on what - if any - support and intervention they want and need - not what someone else has decided for them.