Trauma involves exposure to inescapably stressful situations that overwhelm a person’s ability to cope. There are numerous research studies that show that trauma interferes with thinking and lowers academic potential. But what about when a person with an intellectual disability has trauma and thinking is already hard?

If you've had a bad experience, particularly if that's involved another person as opposed to a biological event like a storm, then that's going to destroy your trust in people and it's going to make you doubt your own ability to make judgments.

If it's early trauma, it interferes with the development of a sense of self with an identity and agency. We all have a sense of self in the first few years of life, and it is becoming part of mainstream understanding now that early trauma has a severe impact on a child’s development.

Margaret Mahler, an American psychiatrist known for her work on separation–individuation theory of child development, looked at the psychological birth of the human infant which gave us behavioural representations of stages of development. This meant we can observe it and if we can observe it, we can measure it, and if we can measure it, we can do something about it. This is the key part of trauma-informed care.

 

 Box 1: What does trauma do to a person?

  • It interferes with thinking and if you have an intellectual disability thinking was already hard. It is known that traumatic childhoods lower academic potential
  • It destroys trust in other people
  • It interferes with the development of a sense of self with an identity and agency
  • It makes people difficult to understand

 

Trauma also makes people difficult to understand. Not only does it make it difficult for the person with a learning disability to understand other people, but it makes it difficult for people to understand the person with a learning disability. Often the learning disability itself is seen as being the reason for why people behave the way that they do (distressed people hurting themselves, hurting other people, and so on). Yet, the learning disability doesn't make people behave in strange ways. It is the trauma that leads to the behaviours and these need to be understood if we're going to try to help people to cope with their difficulties.

What can we do to help people with a learning disability and trauma?

It is not what we do, it’s the way that we do it. Support must be nurturing, and the meaning of behaviour must be recognised. The early emotional developmental stage must be recognised and accommodated, accepting the infant self behind the adult persona.

If you talk to families of people who have challenging behaviour (such as acting very distressed, self-harming or angry behaviour), you should ask if they can think of anything that happened that was a bit odd before the child was five.

For some people, their early development has been arrested and they haven't reached a sense of self. They could have had good early support, so it didn’t develop into severely challenging behaviour. Then another event happens that triggers off that earlier event leading to the person being in even more difficulty.

In addition, each individual person has their own individual behaviour. It is a reaction to their life experience so the meaning of their behaviour must be recognised. We need to find an approach that gives the person a nurturing, supportive environment within which they can grow.

How do we assess for trauma?

To assess for trauma, we must recognise that it is idiosyncratic. What is traumatic for one person isn't necessarily traumatic for another. It depends on many factors such as what state of mind the person is in and the ability to process what happened and so on. For example, when people suffer post-traumatic stress disorder after road traffic accidents, two people in the same car with the same accident can respond very differently to it because they are different people. And so it is idiosyncratic.

One of the things that has become very clear to me over the years is that a lot of people with a learning disability have had trauma very early in life. This could have been traumatic birth deliveries, or they may have been traumatised by not being able to feed properly, or they may have been in intensive care and traumatised by not being able to have a close relationship with the primary carer. They could also be traumatised by the arrival of a sibling and retraumatised again when that sibling overtakes them. So we need to train staff to recognise trauma, and emotional developmental delay, and the meaning of behaviour.

We need to provide safe places to live that are not prisons, but emotionally nurturing environments and provide therapy to address the traumatic memories and process them differently.

More practice-based evidence is needed

There have been publications of efficacy of trauma-based care since 1989. Randomised controlled trials are not possible so it is mostly practice-based evidence.

I've worked with some very traumatised young people during my career and I am gratified to find more people are now interested in looking at the impact of trauma and trauma-informed care. It is unethical to deny a treatment that you know works so it is important to gather practice-based evidence looking at the right points for intervention.

Some very distressed individuals have had life changing results. I suspect what happens is that when the traumatic event happens, the development stops, and it is ascribed to the learning disability and it is not recognised as an extra emotional disability.

It would be interesting to have a long-term study from birth so that as soon as we witnessed what looks like an arresting of emotional development, we can put an intervention in place and see if it makes a difference.

 

Further reading

 


Dr Pat Frankish is a clinical psychologist with many years of experience in the field of disability and psychotherapy. She has written a number of books on the subject of trauma-informed care.

 https://www.frankishtraining.co.uk/

This article on trauma informed care and intellectual disability is based on talk given at Learning Disability Today’s online conference. A recording can be accessed at Pavilion Learn.