Trauma, Intellectual Disability (ID), and Autism

[Published 11th October 2023 by Lena Nylander]

When we talk about someone experiencing trauma, we often think of the person having been exposed to a very unpleasant event, usually some form of abuse. Being traumatised usually means that the person is affected long after the event/abuse - the person is stressed, perhaps anxious and/or depressed, or has other mental symptoms. It has been shown that individuals with disabilities are particularly vulnerable to both sexual abuse and other forms of violence, which is, of course, reprehensible and must be actively countered.

But there is another type of trauma, not caused by specific or repeated clear abuses or events, but related to a constant everyday stress. It involves misjudgment and consequent overloading of a person's cognitive and communicative abilities, usually in the form of overestimating the ability to understand spoken language, the ability to understand context, and executive functioning. Overestimation often stems from goodwill - a fear of underestimating and thereby offending the person, or that the person would be understimulated. People may think they notice that 'she understands what we're saying' or 'he can handle more than we think.' While there are examples of individuals being understimulated and underestimated, in my experience, overestimation is much more common - which paradoxically can lead to underperformance. When cognitive demands are too high, one cannot perform at all, whereas lowering the demands to a reasonable level can enable the person to understand what needs to be done and do it.

Many adults with ID, with or without autism, and some with autism without ID, are subjected to constant demands or continuous overload - virtually all waking hours, week after week, year after year. When people without disabilities are subjected to prolonged overload, they often respond with symptoms commonly referred to as burnout or exhaustion depression. They function worse, especially cognitively, and experience various types of mental symptoms. Often, they require prolonged relief and sometimes other forms of treatment to regain functionality and health.

My opinion is that a significant number of individuals with ID, with or without autism, who are considered to have so-called challenging behaviours, could be described as traumatised by prolonged overestimation and cognitive overload. Communication with the individual has primarily been through speech, which is the most demanding form of communication - it is fast, context-dependent, and usually uses multiple sensory channels simultaneously. At the same time, efforts may have been made to encourage the person to express themselves, which is not easy when they have not understood. The chaos that arises in the head is sometimes expressed through behaviour that challenges the environment.

Image

It is also common for the environment to overestimate the person's ability to be alone, or to confuse independence with solitude. Engaging oneself constructively and safely places significant demands on executive functioning, which is always deficient in individuals with ID. Well-developed executive functioning is also needed to make what is known as informed choices - to understand consequences and choose correctly, not something harmful or not beneficial. Making choices is often a stressful situation, and for a person with ID and/or autism, even facing seemingly simple and obvious choices in everyday life can be stressful and ultimately traumatising. A good cognitive support can sometimes be to avoid making choices - to have someone else provide the support to do it for them.

How can trauma from constant overestimation and consequent stress be avoided? Not surprisingly, it comes down to the environment that provides daily support to the adult needing to have knowledge of the person's strengths and weaknesses, so that the support can be tailored to the individual. Support interventions cannot be based solely on a diagnosis - individuals with ID and/or autism vary greatly in terms of functions and needs. Many times, staff in LSS housing, daily activities, or support staff receive insufficient information about the person's functioning. Staff often have to try things out and work on instinct, which is difficult and carries risks of unnecessary mistakes, leading to stress and traumatization for the person who should receive help, as well as unnecessary stress for the staff.

One way to understand function and needs is to start with psychological testing, if available. Testing provides measurements that can be translated, for example, into mild, moderate, or severe ID, and can also provide information about strengths and weaknesses related to the different test tasks. However, an intelligence test is always a peak performance because the testing is done under optimal conditions - it shows what the individual can achieve in the very best case. In everyday life, conditions are rarely optimal, which is why most people operate at a lower level in their daily lives.

Image

A useful functional assessment is the Vineland Adaptive Behavior Scale (VABS), which is used in Sweden and other countries to assess function in various areas of daily life. It has traditionally been believed that VABS cannot be used for adults, but it works perfectly well, and in the latest version, this is made clear. The scale means that the environment, which knows the person well, is asked a number of questions about what the person can do entirely independently. Ideally, the questions should be asked in an interview, as many, especially relatives, have a tendency to underestimate the extent of the help they provide to the person. The interview format allows the interviewer to ensure that the interviewee has understood the questions correctly. The result of the interview often means that a clear difference is seen between different abilities needed for independent daily life. A common variant, which can be a surprise for the environment and should lead to greater emphasis on clarification and alternative communication for the person, is that the person has much more difficulty listening and understanding than, for example, reading and writing. It becomes a strong 'aha' experience when one realises the stress the person has been subjected to because so much of the communication from the environment has been incomprehensible.

Another complementary method for assessing primarily comprehension level is ComFor. It can be used for individuals with autism and moderate to severe ID, and provides a clear and useful picture of the type of alternative and augmentative communication (AAC) the person can absorb, and how AAC should be used for the person. ComFor is more complex to use as it is a test where the person needs to participate, and the method requires some training and materials. In many places, there are professionals in habilitation who use ComFor. Especially when individuals exhibit challenging behaviours, ComFor, in addition to VABS, can provide guidance on how to relieve the person cognitively.

Finally, instead of stress and traumatisation - focus on the strengths, and on what the person finds enjoyable! An excellent idea that comes from the Belgian psychologist Peter Vermeulen is to create a well-being plan. Staff and close relatives, preferably in collaboration with the person if possible, succinctly summarise what the person needs in their daily life to feel good and be happy and content. Then, during staff meetings, the well-being plan can be brought out and discussed on how to follow it. Achieving the greatest possible well-being for the person is the responsibility of the environment, and it requires providing the right support so that the daily cognitive load is adapted to the person's actual ability. Thus, traumatisation through stress can be fairly easily avoided.

[This is a blog. The purpose of the blog is to provide information and raise awareness concerning important issues. All views and opinions expressed are those of the writer and not necessarily shared by the GNC.]