What Does It Take?
Working with people with a learning disability and/or asc can be extremely challenging though equally as rewarding, it is of vital importance to us that we employ the best people to deliver our mission, aims, philosophy and the highest quality of service. Do you have what it takes?
What makes a ‘good’ practitioner in the field of learning disability/autism?
This article was written by Theo Peeters and Rita Jordan, and first published in the Good Autism Practice Journal by the University of Birmingham in April 1999. The article reflects upon professional experiences of the authors and considers some fundamental characteristics’ of staff working with people having an asc.
At ASC Healthcare, supported by our understanding and knowledge of the uniqueness of each person’s condition, we accept that these ‘key characteristics’ and more besides remain valid today, it is of vital importance to us that all of our staff are able to practice with character, competence and commitment.
The profile of a ‘caretaker’ for someone with autism – Extraordinary people require extraordinary professionals. Thirty years of (joint) experience in training and practice in the field, have caused us to reflect on the characteristics that make a ‘good’ practitioner for working with individuals with autism. We conclude that in order to help these different individuals with autism, professionals themselves must be a little ‘qualitatively different’.
What is the secret? – Until now we have always said, for want of another explanation, that one needs to be ‘bitten by the bug’ of autism. For insiders this is perfectly clear, yet we know professionals who will never be bitten by the microbe, who are ‘immune’ from the bug. The problem is that bugs are invisible to the authorities, and those making appointments, and to those who are deciding for themselves whether this is the right field of work. So we think that developing a professional profile for staff in autism is necessary, even if it derives from our experience and not from empirical research. Below, we offer our ideas on the kinds of personal characteristics that are needed for effective work with children or adults with autism.
1 Be attracted by differences
We think that it helps to be a ‘mental adventurer’ and to feel attracted to the unknown. Some people fear differences, other people are attracted and want to know about them. The key question to ask oneself is how one reacts when normal ‘good’ practice fails to achieve the expected result: is one intrigued or defensive?
2 Have a vivid imagination
It is almost impossible to understand what it is like to live in a literal world, to have difficulty in going ‘beyond the information given’ (Bruner, 1975), to love without inborn social intuition. In order to be able to share the mind of someone with autism, who has a problem in empathy, we must have enormous levels of imagination in compensation. As Sinclair (1992), an adult with autism, has said, since it is people with autism who are meant to have the problem with empathy, how come it is the individuals with autism who are the ones who have to make all the effort to understand and communicate with us? Staff may never be entirely successful in understanding individuals with autism (not least because they are individuals and each will need to be understood as such) but they need sufficient imagination to encompass the problem and not to define it in terms of a failure to conform.
3 Be able to give without getting (ordinary) thank you’s
We need to be able to give without receiving the normal signs of approval and warmth in return, and not to become disappointed by a lack of social reciprocity. With experience, staff will learn to detect alternative forms of thank you, and the gratitude (whether or not warranted) of many parents often provides ample compensation.
4 Be willing to adapt one’s natural style of communication and social interaction
The style needed is more linked to the needs of someone with autism than to our spontaneous levels of social communication (Jordan, 1996). This is not easy and requires many efforts of adaptation, but it is important to consider whose needs we are serving. At the most basic level, staff need to allow time and space for processing information, especially verbal information, so they need to speak in short phrases with clear pauses in between. This style of speech comes more naturally when we are confronted with an individual without speech and/or with severe learning difficulties; it is far more difficult to train ourselves to do this when the person has well developed speech themselves, but still may have problems with language processing. One of us is a hopeless decoder of visual (especially map) information so has to ask for written directions whenever she can. The person with autism may not have insight into their own needs nor the assertiveness to make their needs known, so staff need to adjust their teaching style as well as they can to match the learning style of the individual with autism and then go on to teach the awareness and assertiveness to deal with others less able (or willing) to adapt.
5 Have the courage ‘to work alone in the desert’
Especially at the beginning of the development of appropriate services in an area, so few people understand autism, that a motivated professional risks being criticised instead of applauded for his or her enormous efforts. Parents experienced this kind of criticism much earlier:’ all he needs is discipline’, ‘if he were mine’, ‘refrigerator mothers’ and so on. Networking with others in similar positions can offer some of the support that is needed.
6 Never be satisfied with how much one knows
Learning about autism and educational strategies is continuous, as knowledge of both expands continuously. The professional who thinks s/he has found it, has, in fact, ‘lost it’. Training in autism is never ‘finished’. Nor, of course, is there ever a single ‘right’ answer, at least not in a global sense. There has to be an individual approach developed to meet individual needs, while taking account of some of the common things we know about autism.
7 Accept that each bit of progress brings a new problem
People have a tendency to throwaway crossword puzzles, if they cannot solve them. This is impossible in autism. Once you start, you know that the ‘detective’ work is never over. Nor is there some ‘expert’ somewhere who knows all the answers and never makes mistakes. Working with autism means a commitment to sticking with it, recognising one’s mistakes and accepting that there may be times, or aspects of development, where regression occurs and that that too can be worked through with energy, empathy and a commitment to ultimate success. Having autism does not make the individual immune from the vicissitudes of life and indeed may make him or her more vulnerable to them. Staff should not over attribute behaviour or mood to the autism- but should help the person with autism recognise the human condition with all its joys and despairs and be there to help him or her celebrate the joys and get through the despair.
8 Have extraordinary pedagogical and analytical capacities
The professional in autism needs to take very small, but meaningful, steps and to use visual (or in the rare cases of visual disability, other) support at very individualised levels (Peeters, 1997). There are so many evaluations to be made constantly, that one has to adapt all the time. One can never apply a recipe.
9 Be prepared to work in a team
Because the approach needs to be coherent and coordinated, all professionals need to be informed about the efforts of others and the levels of help they provide. This includes parents, especially when the child is young. Sadly, it is often the parents who are left on the outside of the team, yet somehow having to co- ordinate what may be disparate approaches from different professionals. As the child with autism gets older, and certainly once an adult, staff need to find ways of drawing them into the consultative team that is setting goals and deciding on priorities for work. People with Asperger’s syndrome may assert this role in any case, but the challenge comes in involving those who are less articulate (or even lack any means of communication) or at least working towards their involvement by teaching the necessary participative skills.
10 Be humble
We may be ‘experts’ in autism in general, but parents are the experts about their own children and we need to take into account their wisdom and experience. The professional who wants to remain on his or her ‘pedestal’ is not needed in autism. When collaborating with parents it is important to talk about successes, but also to admit failures (‘please help me’). Parents also need to learn that an expert in autism is not omnipotent.
11 Be professional
Some will wait for the word ‘love’ in this list. Love is of course essential, but, as one parent warned: love is not a miracle cure. Most people who are ‘bitten with the bug’ do like people with autism and in many cases they may love individuals. Working closely and intimately with another person, as is usually necessary, creates the conditions for love to develop. But it is not necessary, nor even appropriate, for a professional to love everyone with autism any more than they should love everyone without autism. Parents and professionals who count too much on the effects of love, will become disappointed. If the child does not make enough progress, is it because he has not been loved enough then? Or perhaps we have loved enough, but he has not accepted our love sufficiently. Such attitudes are destructive and create an abyss, when what is necessary is optimal collaboration.
Amor NON vincit omnia. Autism is different.
Bruner, JS (1975) The ontogenesis of speech acts, Journal of Child Language, 2,2 19
Jordan, RR (1996) Teaching communication to individuals within the autistic spectrum, REACH – Journal of Special Needs Education in Ireland, 9,95–102
Peeters, T (1997) Autism: from theoretical understanding to educational intervention, London: Whurr
Peeters, T and Jordan R (1998) Training to prevent violence and abuse of individuals with autism
Paper to Autisme- Europe seminar against violence and abuse in autism: the Daphne project, November 1998, Brussels
Sinclair, J (1992) Bridging the gaps: an inside- out view of autism (or do you know what I don’t know?) In E. Schopler and G. Mesibov (Eds) High functioning individuals with autism, New York, Plenum Press