Autism: Educational and Therapeutic Approaches

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Efrosini Kalyva

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    About the Author

    Efrosini Kalyva is a psychologist, practitioner, writer and academic specialising in education and treatment of individuals with special educational needs. She holds two Masters degrees and two PhDs and she is a trainer of professionals working with children with special educational needs in a variety of settings. She is currently based in Thessaloniki (Greece), where she is Senior Lecturer in Psychology at City College, an International Faculty of the University of Sheffield. She is also a guest lecturer in public universities and delivers speeches and seminars on the education and treatment of individuals with special educational needs. Moreover, she is the co-author of another book, in Greek, on research methods in special needs education and she has published her work in international scientific journals.

    Efrosini is co-owner, together with her husband, of a private rehabilitation centre for children with special educational needs. She very much enjoys her therapeutic work with these children and tries to work together with their families and their teachers in order to provide them with the best possible services. She has always believed that no reward can match the joy that derives from helping children with special educational needs, and their families, reach their full potential.

    Preface

    I would like to dedicate this book to all the children with ASD that I have worked with and their families who inspired me and taught me important lessons about what really matters in life, as well as to my husband (Vlastaris Tsakiris) and my family who provided me with the love and support to do what I chose in life – work with children with special educational needs.

    I decided to write this book in 2004 because I wanted to give parents and professionals living and working with children with ASD information regarding the effectiveness of available treatments of ASD. It was published in Greek in 2005 and I was happy to see that it was very well received by the target audience and it was cited by official websites relating to the education of children with ASD in Greece. The second reason for writing this book was that I wanted to use it as a textbook for a university course on teaching and educating children with ASD. The students found it very helpful and a lot of them also used it as a resource when working with children with ASD. This version of the book is based on the Greek original and is enriched with all the latest studies. I hope that you will find it as interesting and as helpful as the Greek audience, and I would be delighted to answer any queries at: kalyva@city.academic.gr

    Finally, I would like to thank: Amy Jarrold and Alex Molineux from Sage Publications and especially Jude Bowen for believing in my vision and helping me realise it; the anonymous reviewers of the book proposal and the sample chapters for their constructive and helpful comments; the reviewer of the whole book for taking the time to make very useful and critical suggestions; Panagiotis Tsakiris for his drawings; Vaya Papageorgiou who wrote the preface of the Greek edition of the book and some friends and colleagues for their help and advice at various stages of my career (in alphabetical order) – Ioannis Agaliotis, Vaios Dafoulis, Angeliki Gena, Maria Georgiadi, Anastasia Kasiara, and Vlastaris Tsakiris.

    EfrosiniKalyva, BSc, MSc, MmedSci, PhD, PhD

    Introduction

    Autism is a pervasive developmental disorder with severe difficulties in communication skills, together with difficulties in regulating attention, cognitive, sensory, motor, and affective process (APA, 2001). Autism is no longer considered a rare disorder, since it is more common than Down syndrome, cystic fibrosis and diverse forms of childhood cancer (Fombonne, 1998; Gillberg, 1996). This is one of the reasons why many scientists explored facets of autism spectrum disorders (ASD), with 3,700 published articles between 1990 and 2004 (Volkmar et al., 2004).

    Infants with ASD do not exhibit the anticipated attachment behaviour towards significant others, such as their parents. However, the most characteristic behaviour, which is observed by parents and leads experts to the diagnosis of autism, is the absence of interest in other people (Rapin, 1997). Many children with ASD experience delays in communication (for example, they do not understand the meaning and the importance of the communicative process) and in social skills (for example, they fail to create and sustain relationships with other people). Moreover, it is estimated that 75 per cent of children with classical autism are low functioning (Waterhouse et al., 1996).

    Autism is often diagnosed in infancy and causes understandable distress to the child's parents and the broader family, while Asperger syndrome and atypical autism, which are usually not diagnosed until middle or even later childhood, are equally distressing. Many parents report that they feel relief at first because they can finally give a name to the inexplicable behaviour of their child; however, later on they are often left to their own devices with minimum guidance and support. Of course, this is not the case everywhere, but in many countries there is no support for parents after the diagnosis. So, parents are faced with a plethora of treatments that guarantee spectacular outcomes and they are usually willing to try any ‘promising’ therapy in order to help their child overcome ASD. Parents see a child who looks perfectly ‘normal’ and believe that a ‘typical’ child is ‘hiding’ somewhere waiting to ‘come out’. Therefore, parents look for what many treatments promise – a cure for ASD. However, most professionals working with children with ASD know that there is no cure; the therapies that promise a cure either lack scientific background or exaggerate some effectiveness that they have in dealing with some characteristics of ASD (Herbert and Sharp, 2001).

    Most scientists agree that the criteria and the limits that are set to distinguish pure science from pseudoscience are not always clear-cut and practical, since the differences are more qualitative than quantitative (Bunge, 1994; Herbert et al., 2000; Lilienfield, 1998). The therapies that are based on pseudoscience are promoted often by individuals or organisations that have a direct and substantial financial benefit from their commercial success. These therapies are based on anecdotal evidence from parents, who may not be able to objectively assess what is happening. Moreover, it is possible that some parents exaggerate the positive effects that a certain therapy had on their child because even the slightest improvement is essential to them. Some therapists choose very carefully the data that they reveal and the way they are presented, while automatically rejecting any counter-evidence or criticism. So, they are spread either by word of mouth or through web pages in the Internet or through books and printed material that is largely uncontrolled and should be viewed with great caution (Green, 1996a, 2001; Herbert and Sharp, 2001; Smith, 1996). Some ineffective therapies are based on unsubstantiated theories on the aetiology of ASD – for example, infection by mucus candida (Adams and Conn, 1997; Siegel, 1996), random incidents that coincide with the appearance of ASD – for example, childhood vaccinations (Dales et al., 2001; Kaye et al., 2001; Manning, 1999) or outdated theories – for example, unloving mothers (Bettelheim, 1967; Mahler, 1968; Tustin, 1981).

    It is encouraging, on the other side, that many promising programmes have been developed for addressing the characteristic behaviours of ASD and have added an optimistic flavour. These approaches have been assessed using scientifically acceptable research methods, despite some methodological limitations, and have been proven effective when properly implemented. However, no single approach can successfully address all the characteristic behaviours of ASD and it is therefore advisable to combine the most effective treatments and to adjust them to the needs of every individual with ASD in order to achieve the desired outcome. This is the suggestion of the Committee of Science and Practice of the American Psychological Association (Gresham et al., 1999; Rogers, 1998).

    All the contemporary and scientifically proven information regarding the effectiveness of the methods that are used to treat ASD are either presented at scientific conferences or published in scientific journals. Therefore, it is likely that many parents and professionals who work with children with ASD and their families do not have access to these sources of valid information. Moreover, each individual with ASD may exhibit such diverse symptoms that it is extremely challenging to identify the most appropriate treatment method. For example, there is such great variability in reactions to medical treatment, that a psychotropic medicine may exacerbate the symptoms of one individual and decrease those of another. Children mature as they grow older and it is difficult to disentangle the effects of maturation from the effects of a treatment. So, many parents, educators or, even, mental health professionals wonder where the harm is in trying a therapy that is not scientifically tested. I suggest to parents and professionals that they should be fully aware of the advantages and disadvantages of any intervention that they choose to adopt (Dempsey and Foreman, 2001). Each therapy has its cost; apart from the financial and psychological cost, children may waste valuable time with ineffective therapies (Fenske et al., 1985). Finally, you should consider the possibility of serious physical harm, as has happened many times in the past, caused by medicines that were ultimately found to have severe side-effects (Gorman, 1999).

    In this context, I start with the approaches that deal most effectively with ASD, according to valid published scientific data, such as applied behavioural analysis, TEACCH and cognitive-behavioural therapy. Then I refer to therapies that are used to deal with the difficulties that children with ASD face in some developmental areas, namely, social interaction, communication and play. Then, I discuss supplementary therapies with limited scientifically proven effectiveness: sensorimotor, pharmacological and other approaches.

    My aim is not to just describe these therapies, but to promote the concept of healthy scepticism in parents, educators, therapists and mental health professionals working with individuals with ASD. This book is not a recipe book with a sample of treatments, but a basis for critical thinking regarding the effectiveness of the most prominent treatments of ASD. They should be adjusted to individual needs, the level of functioning, the receptive and expressive language of every individual with ASD, as well as the diverse educational, political, cultural and financial contexts. I have chosen to review the specific approaches, since they are widely used in several countries and there is published scientific data to either support or question their effectiveness. Moreover, they are included in the treatments presented by most international organisations related to individuals with ASD, their families and mental health professionals working with them. Finally, there are the therapies that are included in most units covering autism and reviewed by students in papers and dissertations.

    I would also like to stress that even the most effective intervention may not bring about the desired outcomes if it is not implemented properly. Therefore, you should bear in mind when reading this book that it is the people who implement the intervention that could make the difference, but their influence cannot easily be scientifically documented and studied. Moreover, I strongly believe that the focus of any intervention should not just be to change and improve the behaviour of the child with ASD, but also to help you realise that the environment needs to change and to adapt to the specific child. I learned from working with children with ASD that the only way to be effective is to accept them as they are and to find a way to evolve together, to find joint ways of communication, expression, affection, respect, freedom and development.

    When I refer to an individual with ASD from now on, I will use the pronouns he/his/him, since most individuals with ASD are males. When I refer to parents, adults, therapists from now on, I will use the pronouns she/hers/her, to make the distinction from the individual with ASD. I use the term ‘therapist’ because the person who designs and implements the approach should be a trained professional, but this does not mean that all individuals with ASD receive professional treatment. The therapist could be a parent, a teacher, a peer or anyone working and living with the individual with ASD. I would also like to stress that the terms ‘therapy’ and ‘therapist’ do not imply that ASD can be cured, but that the individual's level of functioning could improve.

  • Epilogue

    When choosing the appropriate intervention for a child with ASD, professionals and parents have to answer the following questions (Jordan, 1999a):

    • Which intervention will be more effective for the particular child?
    • Was the particular intervention successful in the past?
    • Is intervention A better than intervention B for the specific child?
    • Is the intervention carried out the way it was planned?
    • Which child will benefit more from intervention A than from intervention B?

    In order to answer these questions you can use the guidelines and the criteria that determine the extent to which a given therapy is supported empirically as being effective. Researchers usually draw a distinction between the efficiency and the effectiveness or the clinical use of a therapy (Lonigan et al., 1998). The studies that demonstrate a therapy's efficacy focus on whether it decreases the unwanted behaviours and it increases the functioning of the child with ASD, and they are conducted under extremely controlled conditions that include random assignment, control group and controls of the procedure's integrity. On the contrary, the therapy's effectiveness depends on how well it functions in certain contexts and situations where it is implemented (Gresham et al., 1999).

    Another way to look at the distinction between efficacy and effectiveness is based on external and internal validity (Cook and Campbell, 1979). Internal validity refers to the extent to which changes in the dependent variable (for example, socialisation) are due to systematic changes in the independent variable (for example, in the use of the Circle of Friends) and not to other variables (for example, maturation, or the implementation of a play-based therapy). Therefore, internal validity is essential for determining a therapy's efficacy. External validity refers to the extent to which the findings of a study can be generalised to other settings, other children with ASD, other therapists and other parents/families. Therefore, external validity is essential for determining a therapy's effectiveness.

    A report compiled by Bristol et al. (1996) noted several methodological and statistical issues that should be resolved in the future in order to estimate the effectiveness of a treatment of ASD:

    • Studies should use experimental designs that compare different therapeutic approaches. Is therapy A more effective than therapy B in a strictly controlled condition?
    • Children should be randomly assigned to each experimental condition and the therapy should not be applied only to children with high functioning ASD who are likely to do better.
    • Standardised therapeutic protocols will enable the assessment of a range of behaviours and skills both in the laboratory and in naturalistic settings.
    • It is recommended to use external assessors who are not informed about the research questions and the research hypotheses, a fact that hinders intentional or unintentional bias.
    • Therapies must be applied according to the predetermined guidelines. Even if a therapy is perfect in its conception and planning, if it is not applied properly and credibly then it may not be effective.
    • Longitudinal studies can assess the indirect, direct and long-term effects of a therapy and identify what makes it effective in the long term.

    Freeman (1997) suggests a list to assess programmes or approaches for the treatment of ASD:

    • Be cautious about procedures or programmes claiming that they can ‘cure’ all or most children with ASD.
    • Look for scientific data that document the effectiveness of a programme and the way they were collected.
    • Pay attention to programmes that deny having any methodological weakness.
    • Check whether the school that the child attends will agree to implement some therapy.
    • Realise that any treatment is just one of many that exist for children with ASD.
    • Make sure that the intervention is based on the individual evaluation of information about the needs of each child.
    • Do not apply any new intervention before you determine which are the necessary evaluation processes that you need to design an appropriate treatment.
    • Remember that most new and promising therapies may not be scientifically sound, so try to be critical of what you hear and see.

    It is difficult to evaluate the programmes and the therapeutic approaches that are used with children with ASD because: (1) there is variation in the behavioural characteristics of children with ASD, (2) it is difficult to control the variables that might affect every therapy, and (3) it is challenging to measure small, but possibly important, changes in behaviour. Even if a therapy is particularly effective for some children, it would be practically impossible to be equally effective for all children with ASD. It is equally plausible that a therapy that is ineffective for most children with ASD contributes to the progress of a few. The heterogeneity and the multiple possible causes of ASD make it difficult to prove the effectiveness of different therapeutic approaches (Lord, 1997). Perhaps a more sophisticated diagnosis of ASD in the future could include specific suggestions for therapy. Trainers, therapists and service providers should constantly evaluate the effectiveness of the therapy that they apply to every child with ASD and keep in mind that the most effective contemporary approach to ASD includes early intervention, low teacher/student ratio, family participation and individualised instruction.

    Further Reading
    Sherer, M.R. and Schreibman, L. (2005) ‘Individual behavioural profiles and predictors of treatment effectiveness for children with autism’, Journal of Consulting and Clinical Psychology, 73: 525–38. http://dx.doi.org/10.1037/0022-006X.73.3.525

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