EMDR Therapy Quarterly

“You can’t use EMDR with people with learning disabilities.” This was a statement made by my EMDR trainer in 2015. I was working with older adults at the time, but I had a long history of working with people with intellectual disabilities, so I was instantly curious. The statement likely reflected the literature and evidence base at the time, but I began to think, “Well, why can’t you use EMDR with people with learning disabilities?” Shortly after my training, I took a job in a community learning disabilities team, and this afforded me the opportunity to explore this question further. 

What are intellectual disabilities?

Intellectual disabilities (ID) is the internationally recognised term and, as such, tends to be the preferred term in academic writing and will be used for the remainder of this article. In the UK, the term ‘learning disabilities’ tends to be used to describe clinical services for this client group. In the UK, learning disabilities/intellectual disabilities are a protected characteristic under the 2010 Equality Act.

National and international definitions of intellectual disability generally share three key criteria. These are:  a significant impairment of intellectual functioning, a significant impairment of adaptive behaviour (social functioning), with both impairments arising before adulthood (British Psychological Society [BPS], 2015).

An easy-read explanation would say, “A learning disability is when you have difficulty understanding information, when you may need help and support with some everyday tasks, and your difficulties will have started when you were younger (before you were 18).” (NHS England, n.d.) This easy-read version has been adopted by Livewell Southwest Community Learning Disabilities Team, Plymouth, UK.

‘Intellectual disability’ as a label is often confused with learning difficulties. Specific learning difficulties (SpLD) include dyslexia, dyscalculia and some language disorders. Learning difficulties are not the same as an intellectual disability. Intellectual disabilities are also distinct from neurodivergence (for example, autistic spectrum condition), although neurodivergence does co-occur in a high proportion of people with intellectual disabilities (PWID).

The importance of considering PWID

The history of people with intellectual disabilities (PWID) is characterised by marginalisation. We are still relatively fresh in ending institutionalisation, and it is relatively early days in valuing PWID’s contribution to society (Muta et al, 2011). This context has meant that PWID have been excluded historically from opportunities most of us take for granted, including the option for therapy (Webb, 2014).

PWID represent 2.5% of the population, and they have a human right to the same options for National Institute for Health and Care Excellence (NICE) recommended treatments like the rest of us (Equality Act, 2010). While not everyone in the EMDR field will work with people who are nonverbal, they are all likely to work with people with mild to moderate ID at some point. Especially if working within the public sector. It is worth noting that specialist ID services are aware of around an estimated 25% of the population of people who fit the criteria for ID, and therefore an estimated 75% of people who would fulfil the criteria for ID but are undiagnosed or not known to specialist ID services (Whitaker and Porter, 2002). Therefore, PWID (who are undiagnosed) are most likely to present to mainstream mental health services or to independent practitioners if they need therapeutic support.

Intellectual disabilities and trauma

Adverse childhood events are significantly higher for PWID (Santoro et al., 2018). PWID are more likely to experience trauma, and they are more likely to be underdiagnosed with PTSD (Byrne, 2020; Mevissen & De Jongh, 2010). Traumas are more likely to be multiple and occur throughout their lifetime. There is a higher incidence of bullying in childhood and adulthood, including assaults, abuses and family members and/or carers who hurt and let them down. Safety is not a given at home or in the community. They are not heard and can feel invisible. They can live with the grief of having a disability and the absence of things most of us expect – work, marriage, children, pets, a choice in what we eat or when we sleep (Fletcher et al., 2016; Morris et al., 2020).

The case for offering EMDR to PWID

For people whose lives are so challenging, who are likely to have experienced such great trials, and for those who care about them and for them, EMDR can offer something that can mean change. For those who have PTSD symptoms, EMDR can offer a reduction in trauma symptoms and an increase in quality of life (Porter, 2022). Benefits can occur not only for PWID but also for those who care about them and for them. This has wider ripples, enabling carers to care better and for longer. In therapy, PWID can feel valued, heard, and validated (Sinason, 1992).

Barriers to using EMDR with PWID

Barriers to EMDR for PWID are not as well researched as CBT, and further exploration would be useful. Like other therapies, barriers to EMDR for PWID in mental health services may include the challenges of making reasonable adjustments within service constraints (Marwood et al., 2018). Schipper-Eindhoven et al. (2024) identified several challenges in making adaptations to EMDR for this client group. Therefore, clinicians from both mainstream and specialist learning disability teams may not feel comfortable or perhaps familiar enough with the adjustments PWID need to access EMDR therapy. Clinicians may feel nervous using EMDR with PWID. Dagnan et al. (2018) described increases in clinician confidence following added education to adapt CBT. A lack of confidence in their own abilities and a fear of getting it wrong were identified as concerns for clinical staff working with PWID in palliative care (Ryan et al., 2010). In relation to private practice, PWID are often unemployed or have limited incomes. They do not typically have the funds to access private practitioners.

At a basic level, there is no EMDR protocol for PWID, so offering EMDR can raise anxious questions: Is it safe? Can they consent? Do they understand? Will it make things worse? It certainly raised these questions for me. Offering therapy to people with more severe intellectual disabilities (those whose cognitive and adaptive functioning fall within the bottom 1% of the population) can feel especially daunting.

PTSD and intellectual disability

PSTD is experienced by PWID in similar ways to people who don’t have intellectual disabilities. PWID do, however, have added challenges in understanding their symptoms or in communicating their distress. These challenges mean that PTSD can present differently for PWID, which influences how carers and clinicians might recognise and understand their PTSD (or C-PTSD). Recognition is further complicated as their trauma histories can be lost over time. Alongside this are difficulties in capturing PTSD symptoms in PWID and matching them to the standard diagnostic criteria. Trauma histories often underpin behaviours of concern or breakdowns in care, in homes, or in relationships. These latter issues then become the focus of the work, rather than the person’s trauma experience.

Often, PSTD is not looked for or recognised for what it is. Instead, symptoms tend to be described, rather simplistically, as ‘that’s the way they are’ or labelled as ‘behavioural’ (For further insights on this matter, as well as the adapted DSM V criteria for PTSD and adapted measures for its assessment, refer to Borghus et al. 2018, Langdon et al. 2023, and Mevissen and DeJong, 2010). 

Exploring EMDR with PWID

Time and evidence have moved on since my EMDR training in 2015. There are now around 30 chapters and papers about EMDR with PWID, with clinicians and researchers adding to them each year (e.g., Hoogstad et al., 2024; Mevissen et al., 2011; Unwin et al., 2019). These chapters and papers provide rich guidance on how to make EMDR accessible, and I frequently draw upon them. For the last nine years, I’ve been using EMDR with PWID. I have worked with people with Down Syndrome and with people with mild and moderate learning disabilities. I have tried to apply its principles with people with severe learning disabilities and their care teams. I have worked with people who do not use words to communicate and with PWID who are autistic.

I have recently been offering group EMDR using the Group Traumatic Event Protocol (G-TEP; Shapiro, 2013) to our community multidisciplinary team (MDT) and to providers, to support them in their clinical or caring work. Like similar studies, such as Farrell et al. (2023) and Pink et al. (2022), this has shown preliminary positive improvements in PQL-5 scores for both MDT staff and for providers. I am also exploring the impact of using a group EMDR format to improve resilience in staff teams via the Group Resilience Enhancement Protocol (G-REP) sessions. G-REP is a new approach to building an internal sense of resilience and is based upon the G-TEP design. It was developed by Maria Masciandaro, who presented it at an international meeting in 2023. I am hoping that in the longer term, these forms of group EMDR can be offered to support traumatised or burnt-out teams to prevent placement breakdown and improve staff retention.

Increasing accessibility to psychological therapy

To increase accessibility to any therapy, clinicians should be making reasonable adjustments (see NHS England and NICE guidance for mental health problems in people with learning disabilities, 2016) in accordance with the Equality Act of 2010. Reasonable adjustments include things like providing information in easy-read format (see NHS England’s ‘Make it Easy’ guide), contacting the person by phone or via a carer rather than by letter, or a carer being present before and after appointments. Reasonable adjustments also include changes within sessions.

For example, engagement can be supported by building in a more conversational approach or shortening sessions to 30 or 45 minutes. To build their confidence, they may need their carer present in the first session. To support understanding and retention, clinicians can draw out the content of the session on a piece of paper as they work. Allowing the PWID to draw or write during the session can also support communication and accessibility. As communication can be more difficult for the person and the clinician (due to limited vocabulary, limited understanding, or limited communication skills), vocabulary should be simplified and the delivery slowed down. Adaptations might also include giving extra written information in an easy-read format to the PWID or asking the PWID to pass on some information about therapy to a carer or family member.

Increasing accessibility to EMDR

In relation to EMDR, it is necessary to step outside the standard protocol for many people, although not for all (see Porter, 2022, for an overview). Case studies have shown that eye movements may not be possible for some people, and crossing arms for tapping can be tricky for others. Clinicians may need to use TheraTappers ™ or draw on children’s protocols to support access to bilateral stimulation (BLS).

Some PWID think in the here and now and are unable to think back to their past. In these cases, a blind-to-the-therapist approach can work, or simply working with what people bring to the session rather than trying to go back to the trauma memory each session can be more effective. For example, I often end up processing an event that has occurred between sessions, such as being let down by a staff member or a disagreement. This approach, while not the standard protocol, usually results in key traumatic material being successfully accessed and processed within the session (e.g., NC- “I can’t trust people”, or “people are frightening/dangerous”; Memory- “it was like when I was hurt”). Alternatively, a bit of chit-chat at the beginning of the session can help people feel heard enough that they are then able to share more trauma material, which can be addressed using the standard protocol. Like working with C-PTSD in general, clinicians may need to use many more cognitive interweaves to support people to develop their adaptive information. Clinicians may need to forget about the NC and PC (eek!) or use simpler 3-point visual scales to assess SUD/PC.

Using EMDR systemically

Outside of the one to one EMDR work, systemic thinking can be supportive. PWID often need to be helped to consider how they might build their connections with others or how they might link in with other mental health or social skills groups. In specialist NHS intellectual disability services, clinicians will often find they need to offer a few psychoeducation sessions to staff teams, families and partners, and possibly share the persons history (when possible, with their consent and involvement) to support the system to understand the person in the context of PTSD rather than as ‘behaviour’ (Barrowcliffe & Evans, 2015; Porter, 2022; Rodenburg et al., 2009). Staff involvement in EMDR with PWID is an area that needs more exploration.

The people I have discussed have given me permission to tell their stories.

EMDR with people with severe intellectual disabilities

It’s worth noting that there are some interesting papers describing EMDR with people with SpLD and with people without LD, with late-onset dementia (Hoogstad et al., 2024; Ruisch et al., 2023). It is early days for this area, but these case studies can be useful to draw upon where a person can’t engage directly with EMDR but is troubled by PTSD. Staff involvement features heavily in this type of work.

Moving forward

Since the 2010 Equality Act, IAPT and mainstream psychotherapy services have made reasonable adjustments to ensure people with mild to moderate intellectual disabilities can access mainstream mental health support. It is important to continue to train clinicians working within specialist community learning disability teams in EMDR so that people who need additional adjustments can also have access to EMDR (NHS England, n.d.). Increased recognition and understanding of intellectual disabilities and the needs of people with intellectual disabilities within the EMDR community would help to support EMDR clinicians within NHS services and private practice.

Clinicians need creativity, bravery and compassion to do this work. In my experience, EMDR clinicians are good at adapting their work; they are great at working with people with developmental trauma and with people who don’t have a verbal memory of what has happened. As such, they are well placed to consider working with this client group. It’s less about knowing all the adaptations or having an ‘intellectual disability protocol’ and more about giving ourselves permission to offer EMDR to PWID. If you are interested in learning more, you can join my EMDR discussion group, which runs quarterly online. The link to join the discussion can be found  here.

Dr Joanne (Jo) Porter is a Consultant Clinical Psychologist working in a Community Learning Disabilities Team in Plymouth, UK. She also works privately with adults without learning disabilities. Jo has special interests in LD, EMDR, complex trauma, autism and dementia. Positionality statement: "I am an intelligent white female who grew up without disabilities in a white working class community. While my immediate family held strong socialist views, my wider family and community voiced and held right wing and prejudiced views. The first and only person in my family to attend university, I was privileged in receiving free education. My learning, aspirations, and professional life were shaped predominantly within white middle class environments. I think my writing and work will be influenced by socialism, class, equality and feminism."