CARING FOR PEOPLE WITH AUTISM AND INTELLECTUAL DISABILITY

by Ciaran Leonard

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If you would help me, don’t try to change me to fit your world. Don’t try to confine me to some tiny part of the world that you can change to fit me. Grant me the dignity of meeting me on my own terms—recognise that we are equally alien to each other, and that my ways of being are not merely damaged versions of yours. Question your assumptions. Define your terms. Work with me to build more bridges between us.
(Sinclair, 1992)

A good friend of mine, a Liverpudlian, has recently been dating a lovely Leitrim woman. Inevitably, after a few months dating, the questions are posed : ‘Any sign of a ring?’ ‘When are you two going to give us a day out?’ To which my buddy responds with typical scouse humour: ‘Steady on, it’s a marathon not a sprint!!’ Caring for someone with autism requires a similar attitude: it’s a marathon not a sprint. Change is slow, gradual, and not immediate. Strategies to promote inclusiveness, increased socialisation and to overcome societal barriers need to take the long-term view. Routines and practices can only be restructured in gradual, incremental form.

In my experience of adult men on the autistic spectrum who also live with varying degrees of intellectual disability (ID), there are a range of approaches, attitudes and practices which, if not genuinely therapeutic, can serve to ensure at least a safe and calm environment in which other, more therapeutic work can be completed. Ultimately, the complicating factor in caring for people with autism is the extent of ID also present. It goes without saying that people with autism do not usually need such interventions—this article is limited to addressing issues where autism and intellectual disability are present simultaneously. The normal, usual accepted strategies for supporting people on the spectrum are complicated by this additional factor, thereby adding a degree of complexity to the care equation.

Before outlining some strategies, it should be noted that a multidisciplinary therapeutic approach to care is of paramount importance if we are to be serious about making advancements in quality care, and not merely accepting a maintenance approach to care. Unfortunately, the latter is often the most we can aspire to because of limited funding which results in a reduced number of possible interactions from associated professionals such as occupational therapists, speech and language therapists, psychologists, psychiatrists, behaviour therapists and skills coaches. Ideally, a well-funded, multidisciplinary approach would be of great benefit.

Interdisciplinary care

Support and assistance are sometimes available from some of the other professionals referred to above, but this is often only piecemeal because of the funding issues, and so we do not always achieve a coherent, integrated approach to the individual’s care. In reality, much of this work falls on the shoulders of social care workers and nurses involved in direct care. Supports for family members are also conspicuous by their absence. While I am generalising, much work is also done and positive interventions are forthcoming, however, I would suggest that a lack of cohesive structures, difficulties with funding and the lack of a common vision for the person with autism and ID are, in essence, the greatest barriers to improved care. This lack of vision is found at various levels, both societal and organisational. Individual care organisations can take steps to address some of these issues within their internal structures, but the financial aspect requires a complete rethink on how we allocate funds, in order to use them to maximise the quality of care offered. There is much talk within the health services of money following the patient and this would invariably go some way to implementing a vision of how life could be for the citizen with autism.

So, how do we care for the adult who has ID and is also on the autism spectrum? No one individual is the same as the next, and so care has to be tailored to the individual. While we often ‘group’ people with autism, their place on the spectrum means that their needs and abilities differ.

If you would help me, don’t try to change me to fit your world. Don’t try to confine me to some tiny part of the world that you can change to fit me. Grant me the dignity of meeting me on my own terms—recognise that we are equally alien to each other, and that my ways of being are not merely damaged versions of yours. Question your assumptions. Define your terms. Work with me to build more bridges between us.

The care environment

Generally speaking, structure and organisation within the care residence needs attention. Chaos, untidiness, confusion, excesses of anything all tend to complicate the situation, even leading to outbursts of challenging behaviour. The key is to provide a low.arousal environment with a minimum number of stimuli to avoid overloading the senses. Routines and rituals are important and cannot be diminished in their significance for the needs of the person with autism. Certainty lends to a sense of security, and predictable routines allow the person with autism to gain some control over an otherwise alien world. We need to remember that autism has a large dysfunctional sensory aspect which is often in conflict with the real, material world around the individual. How they understand and interact with their surroundings will be coloured substantially by sensory information—information that differs from how the rest of us perceive our environment.

Routine continues to be important despite the fact that we often try to reduce the rigid structures around the person in order to facilitate more community integration. This is indeed a challenge— supporting an individual to move beyond their comfort zone to access and integrate into the community while maintaining a structure in which they can feel in control. This conundrum is at the heart of the challenge to care.
Another common difficulty in caring is that of disrupted sleep patterns. Again, low arousal, structured night-time routines can go a long way to addressing this. A lack of sleep or a disturbed night may be at the root of the challenges presented the following day. This vicious circle needs to be broken, and routine and structure are essential for this. A gradual slow-down in evening activities, followed by a shower or bath, and supper can help to facilitate sleep – but of course, this is not a panacea for all ills and disturbed sleep patterns remain a challenge to us all.

Managing versus changing behaviours

I sometimes compare autistic behavior to an errant computer programmeme. There is a logic to it, once you can understand it. Every behavior or function has a logic to it—if we can spot it. This is the challenge. We need to find the logic between the action or behaviour and the thought process of the person with autism. We have heard much about cause and effect in the world of behaviours that challenge, but fully understanding this is easier said than done. When attempting to change something, a lot of preparatory work needs to be completed. New tasks have to be broken down into smaller, more manageable tasks (depending on the individual, of course). Some may handle multiple instructions and commands quite well, while others need time to process each piece of information. If we set out to change a behaviour, we need to first ask: is this change necessary? What will the benefit be for the person with autism? Does the behaviour really need to be changed or am I trying to make him/her like me/us? Clarity about what we hope to achieve, and why, need to be addressed and communicated in whatever form possible to those in our care.

Most individuals in a care environment will have several carers, maybe four, five or six. Although inevitable, this can be a cause for confusion, and coping with different faces and personalities may be a stressor for the person on the spectrum. No matter how detailed and rigorous the established routine, no two people carry out a task identically.

Communication difficulties

Communication skills will often be extremely limited; functional speech may or may not be present. In effect, this means the carer has to observe, interpret and even double.guess what the needs of the individual may be. But despite the difficulty, communication does occur in one form or another and the challenge for the carer is to learn how to communicate effectively. There is a tendency (to which we are all guilty to some extent) of assuming that if someone doesn’t speak they either have no preference to express or lack the intellectual capacity to do so. If a person is encouraged verbally to physically show the carer what they want, and if they are given it, a large degree of frustration can be removed. Watching someone’s eyes can be of immense assistance: what are they looking at or toward? Body language can tell us so much if we read the signs. These are all challenges to the carer or the family of someone with autism who has limited communication skills, but it is work which deserves more of our attention.

Relationship

Building relationships can also be challenging, especially when it may seem to be only a one.sided relationship, or one of unequal contributions. There is an old adage in the area of spirituality that sometime’s life is about being and not doing. We may be sucked into the illusion that it is only by doing things together that we form a bond or develop a relationship. Sometimes, just one’s silent physical presence is sufficient to foster a relationship. Just an awareness of the other person’s physical presence, without words being exchanged, may be sufficient to help a person develop understanding and acceptance. In my own experience, a walk together (in absolute silence) can have as much therapeutic effect as a host of other interventions.

Of course, we cannot assume this is sufficient to resolve all our issues, but it is more about our attitudes towards people than about facilitating change. We will never ‘remove’ or ‘cure’ the autism in a person, which begs the question: ‘what do we hope to achieve in the process of our caring interventions?’ We will never make them ‘like us’ (nor should we). We will never get them to behave as we would want them to (God forbid!). So what are our care interventions designed to do? Keep them safe, secure, clean, busy, in good health, nutritiously fed? All very good and worthy objectives, to some extent. The real challenge is to facilitate the potential for growth within each person. As our reference at the beginning alluded to, acceptance of difference automatically reduces the problems we may perceive as needing to change.
To conclude, I am aware that much of what I have written may seem to be prescriptive, and in truth, no complete, one-fits-all system of care addresses all the challenges to caring for people on the autistic spectrum, who also live with ID. As always, getting to know the individual as a unique person with abilities, preferences and a personality all their own will go a long way to reducing the difficulties encountered. As has been said in the media recently, we need to remember that many of those with whom we interact on a daily basis (at home, in work, college or school) may well be on the spectrum themselves. Caring for someone on the spectrum remains a challenge and the difficulties encountered require patience and creativity, but it is a challenge we should relish and not fear.

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