Improving quality of life for people with autism

Autism Europe Aisbl

Autism-Europe aisbl is an international association whose main objective is to advance the rights of persons with autism and their families and to help them improve their quality of life.

Autism-Europe plays a key role in raising public awareness, and in influencing the European decision-makers on all issues relating to autism, including the promotion of the rights of people with autism and other disabilities involving complex dependency needs. 

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FAQ

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References to intervention models and comments on the TEACCH methodology and "Floor Time" model as both opportunities for training and in relation to implementation. (Psychologist, Portugal)

There are very many claims for treatments that are said to bring about recovery or cures from autism but unfortunately most of these are based purely on anecdotal reports and are supported by no experimental evidence. TEACCH methodology does not claim to cure autism, but provides a framework for teaching that takes into account children’s particular skills and difficulties. It combines a structured educational approach with behavioural strategies, and there is a particular focus on the use of non-verbal cues to enhance learning. The TEACCH approach has been widely incorporated into educational programmes across much of the world and many teachers and families testify to its success. “Floor time” is a programme specifically designed to build up symbolic and imaginative skills in children with autism. However, the methodology has never been subject to any form of comparative study and hence it is not possible to comment on its effectiveness, or otherwise.

What are the experts' views on Pet Therapy and in particular therapy with horses and dolphins? (Other, Hungary)

There are no evaluations of this sort of treatment, and despite the very encouraging claims parents should be very cautious before spending their money in this way. Certainly some children do seem to relate well to animals and exposure of this kind can be helpful as part of a wider therapeutic/educational programme. However, swimming with dolphins cannot cure autism even though that experience may be very helpful. I have also had experience of some children who have become very frightened in such circumstances, and for whom the experience has not been a good one at all. On one or two occasions, too, I have known of children who have attacked the animals involved. One patient of mine, for example, was sent back home after trying to bite the dolphin.

Satisfactory results have been obtained from Pet Therapy with dolphins for children with autism with the presence of the psychologist in the water. Comparisons with control groups have not been carried out but the results would seem undoubtedly positive (

(Prof. Fombonne answers): As you say, no experimental verification of the results has been carried out, and in this field it is important to guarantee an objective measure of the changes in order to demonstrate the effectiveness of the treatment.

I'm experiencing persistent obstinate behaviour, together with high intelligence. How can I help my child? (Parent, Greece)

Unfortunately it is not possible to give answers to questions about ways of dealing with specific behavioural problems without knowing much more about the individual concerned. Obstinate behaviour, for example, could be due to the fact that the child is being requested to take part in activities that are inappropriate given his or her level of skills or intelligence or general interests. It could be due to the fact that he or she is very set in their ways, in which case attempting to reduce ritualistic behaviours might be an appropriate way to proceed. The crucial issue is to find out why the child is responding in this way and to attempt to deal with the underlying factors causing this behaviour.

We are the parents of two, 15-year-old twin sisters. Would separating them give better results than their living together? (Parent, Italy)

Unless there is a very good reason for doing so, then it would not seem appropriate to separate two girls who have been living together for 15 years. If there are difficulties within the situation then these need to be closely examined and the individual likes and dislikes of the two sisters carefully considered. Twins, even those with autism, can be very different from one another and may have very different attitudes and needs. Others have much more in common and are able to live happily together. If the decision were made to separate the two this would give rise to many very difficult issues. For example, which twin would be the one to leave home; how would she feel on being separated from the family, knowing her sister was still there. Such a situation could give rise to even more problems. Instead it would seem much more appropriate to seek help for the family as a whole if difficulties arise, rather than considering sending one of the children away.

I have twin boys with autism. Is it better to carry out separate or joint intervention? (Parent, Italy)

It is not possible to give a conclusive answer to this question, as twins with autism can be very similar or very different. They may get along together very well, or they may fight constantly. Whether intervention is carried out together or separately would depend on very many factors. However, on the whole, interventions that suit the whole family and take into account the needs of all concerned tend to work better than interventions focused on an individual child.

Is there any evidence of people with autism with little or no verbal comprehension learning work rules (rhythms …)? (Therapist, Switzerland)

Fortunately, there are many examples of individuals with autism, even those with very little verbal comprehension or speech of their own, managing to cope with work situations, as long as tasks are adequately structured and individuals are given appropriate guidance. There are many non-verbal means of indicating to people with autism what needs to be done, how jobs should be completed, and where finished work should be placed. The success of specialist employment schemes, both in the UK and in America has been well documented although, unfortunately, the numbers of individuals whom these scheme can reach remains limited.

We have visited some residential centres but, according to our experience, people with autism should not be shut away in isolated buildings but be integrated as far as possible into everyday life by living in apartments. Are our views wrong in this respec

As with all the other questions posed making firm recommendations about how an individual with autism should be treated, or where they should be placed, is not possible since appropriate advice will depend very much on that particular individual’s profile of skills and difficulties. It is also very important to take into account an individual likes and dislikes as well as personality. Some individuals would hate living in an isolated farming community, others could be very distressed living in a small apartment in a city. However most individuals with autism do seem to like their own personal space, and freedom to get away from other people if the need arises. Thus, residential settings that can offer a reasonable amount of space do seem to work more effectively than centres in which movement is much more restricted, and people cannot easily be by themselves. Nevertheless this does not necessarily mean living in isolation. Access to as wide a range of “normal” activities as possible is clearly important for the majority of individuals with autism and the best environments seem to be those that offer as much integration as possible with the local community (access to work and to leisure facilities etc) whilst at the same time offering individuals with autism the space and privacy they may need.

Are there networks and/or associations of people with autism? (a specialist)

There are several associations. In England there is a group of people with Asperger's Syndrome who meet on the web and have created a magazine. I can introduce you to the editor who is in the audience and he can tell you more about their magazine.

I would like more precise information about the treatment of children and adults with autism. (parent)

Many people come to me with the case of their child, saying "S/he is 5 years old and is autistic, what must I do?" and I answer "I don't know", in the sense that it is impossible to give information that fits every case. There is no one treatment that is right for everyone, the important thing is to follow an individualised educational programme, appropriate for that particular person.
Dr. Remschmidt, the Chairman, adds: no one method exists, although the effectiveness of cognitive-behavioural based educational treatments has been proven in recent research, no data exists to demonstrate the effectiveness of other methods. This points to the need to research a valid treatment.

Are there different levels of autism (some children suffer more than others) and what are the different treatments and/or therapies in each case? (Parent, Greece; Parent, Spain)

There are indeed different levels in the manifestation of autism and related disorders. In fact, it is helpful to think of autism as a spectrum. Some individuals have severe mental retardation whereas others may have intelligence in the gifted range. Some are happiest by themselves whereas others may approach others incessantly. Some do not have any language, whereas others have vocabulary that exceeds that of typically developing children. The common theme in autism is the difficulty in interacting with others, establishing relationships, and maintaining reciprocal conversations. In most cases, the variables that seem to predict “levels of autism” are level of non-verbal and verbal intelligence, and levels of language (vocabulary, semantics, syntax) and communication (the capacity to convey to others what one wants, feels, and thinks using verbal means – such as oral language, and non-verbal means – such as facial and bodily gestures, and voice inflection and modulation. As for treatments and therapies, clearly, they would vary somewhat depending on the child’s level of functioning. However, it is important to emphasise that treatment programs are provided on the basis of individualised profiles (for a given child), with the goal to address the child’s weaknesses while capitalising on the child’s strengths. It is not possible to summarise briefly what these treatments are, although I will cover these in a workshop, and I am sure that they will also be covered in the course of the conference, by different presenters. In general, these therapies will involve intensive and comprehensive educational programs, typically with a behavioural component, with a focus on social and communication skills training, teaching of adaptive skills (real-life skills), and ways to address the presence of any maladaptive behaviours (e.g., anxiety, aggression) if these are present for the given child.

I am the father of Claudio, 6 years old, who is non-verbal and refuses to eat. I would like to know if there is any possibility that my child will be cured. (Parent, Italy)

It is difficult to talk about a child with autism “being cured”. Autism is a congenital disorder (children are typically born with it). Their disability means that their interaction with the social world is very different from the experiences of typically developing children. Our brains develop, to some extent, as a repository of these experiences. It is, therefore, very unlikely that one could “undo” this development. Reports of “cures” of children with autism are typically not corroborated, and they usually refer to individuals who have made a great deal of progress. And yet, these individuals continue to have many significant challenges in life. However, having said that “cures” are unlikely in autism does not mean that individuals with this condition cannot make great progress. In fact, the vast majority of serious treatments aim at maximising the potential of the child and making him or her more competent in their daily lives. And indeed, over many years, we have seen many individuals making wonderful progress, whereas others are less fortunate. At the Yale Child Study Center we have accompanied many individuals with autism who have completed advanced degrees, and some of them can, and do work independently and live independently. With this in mind, no treatment has shown results consistent with cure, if by that one means that a child previously with autism ceased to have problems in social and communication functioning as a result of a given treatment, becoming indistinguishable from typically developing children.

Doctors say my son is 10% mentally retarded and suffering from autism, will he improve? What are the chances of improvement? (Parent, India)

It is difficult for me to answer this question without knowing your child, because there is too much variability among individuals with autism, and any comment on a given child requires a great deal more information. It is not clear to me what your doctors mean by 10% mental retardation, but assuming that this means that your child has intelligence in the mildly mentally retarded range (with a full scale IQ between 55 and 69), there is clearly a great deal for you and those providing treatment to your child to work with. The “chances of improvement”, if one wants to generalise without knowing your child, depend to a great extent on how much language your child has, and on how appropriate and intensive the program of treatment is that is being provided to him.

Can people with severe autism display slight intellectual disability (mental retardation)? (Parent, Italy)

It is difficult for me to know what you mean by severe autism, but I can take a guess. Individuals who are very socially isolated and unmotivated, that have little communicative ability (and language), are likely to also display a significant level of intellectual disability, at least in the verbal domain. Some individuals may have severe challenges (in social interaction, language and communication, behavioural stereotypies, etc.) and have rather higher non-verbal intelligence. Although the rule, if one may generalise, is that the more mentally retarded is an individual, the more likely that the person does not talk, that he/she may have some medical findings (e.g., the presence of seizures), and that he/she may display stereotypies such as repetitive motor movements and extreme rigidities (e.g., resisting the slightest changes in their environment).

Is the complete lack of verbal communication in autism always accompanied by severe intellectual disability (mental retardation)? (Parent, Italy)

As per the answers above, if one person completely lacks verbal communication, it is very likely that he or she has a very significant intellectual disability.

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