People with autism and their families often experience difficulties in finding accurate, evidence-based information on autism.
1. What is your opinion on autism beign defined as an illness? (parent)
The term illness implies the concepts of treatment and recovery; the definition of autism is connected to behaviours and involves a group of symptoms, not an illness.
2. How much truth is there on the subject of food intolerance in people with autism, and how important is it? (Parent, Italy)
Food intolerance, however it is defined, is a relatively frequent condition and many people in the population (non people on the spectrum) experience food intolerance. It is therefore expected that people with autism will also be found to experience food intolerance at times as there is no reason to believe that autism would protect them against experiencing food intolerance. Therefore, having the two conditions does not mean that there is an association between those two. Whether or not food intolerance is raised above what you would expect is not well established. In order to test this hypothesis, epidemiological data on representative samples of children with autism would be required but they are currently lacking. Some caution should be exerted when reviewing data based on clinical samples that are more likely to over-estimate this association. Some parents have reported that their children improve on gluten-free and caseine-free diet but these are anecdotal reports which need to be backed up by proper studies referred to as double-blind placebo-controlled studies. There has been no double-blind placebo-controlled studies of these diets and in the absence of such data, the claim of an association between food intolerance and autism or about the efficacy of these diets in autism should be regarded with much caution.
3. I would like to know the difference between dysphasia and autism. (Parent, Italy)
Dysphasia or developmental dysphasia or receptive/expressive language disorders lead to severe delays in language development in the child and abnormal language features (such as echolalia, repetitive speech, etc.) which are like those language features seen in autism. However, children with autism have developmental problems in other areas including the development of social interactions and the development of their play skills, imagination and patterns of activities. Some children with dysphasia also display some social abnormalities but they usually have far fewer repetitive behaviours as seen in autism. However, there is some degree of overlap in some cases and the difference between severe dysphasia and mild form of autism is not always easily achieved.
4. My adolescent daughter has experienced language regression during puberty. In the past, she manifested echolalia with some meaningful words, which then completely disappeared. (parent, Italy)
It is impossible to give an answer in relation to this specific child as we do not have sufficient information regarding her clinical record. However, language regression is possible in puberty and it is documented in the literature in a percentage of 10 percent of cases.
5. Since pragmatic language is localised at a cerebral level, is there a region of the brain responsible for analogue language (reduced in the autistic population)? (Therapist, Switzerland)
There is no specific language region which could be deemed responsible for the language abnormalities seen in autism. Several areas in the brain are probably involved in autism such as the cerebellum, the parietal lobe, the corpus callosum, etc. However, we do not have direct brain behaviour connections whereby we could assign a particular behavioural or cognitive deficit to a particular dysfunction of a localised brain area.
6. My son is extremely sound sensitive. he hears sounds pitched so low that no one else can hear them. He is unable to filter out sounds and at times it all becomes too much for him. His ears go bright red when he is bombarded with too much noise. Is there a way to deal with this?
It is true that some children are extremely sensitive to sound and this might be difficult to manage. Using earplugs or earmuffs can be successful strategies if the child tolerates them well. The mechanisms underlying hypersensitivity to sounds in autism are not well known. Note that this hypersensitivity is not specific to autism and it is found in other syndromes such as Fragile-X disorder for example.
7. I have twin boys who at birth were thought to be heterozygotic, but genetic tests have revealed that they are monozygotic twins and are both autistic. My question is: which genetic test can currently be carried out to confirm that this pathology is of genetic origin?
It is true that many twin pairs where the two boys are autistic have been often thought to be DZ (fraternal) but that systematic genetic testing has shown that these pairs were in fact MZ (identical) pairs. This means that parents with a same-sex twin pair should not assume that the twins are fraternal (dizygotic) just based on a superficial physical features comparison. There are currently no genetic tests which can confirm the diagnosis of autism which is entirely based on a developmental assessment and the evidence of qualitative abnormalities in the development of the child. Although there is a strong genetic basis in autism, we have not yet identified the genes involved and we cannot provide direct genetic testing of the children or of their parents to clarify the genetic mechanisms and the genetic risk for further pregnancies. In a small proportion of cases with autism, we have identified particular genetic conditions which are sometimes found in our routine genetic testing. These conditions are Fragile-X disorder, tuberose sclerosis, and various chromosomal abnormalities which have been particularly located on chromosome 15. Again, these abnormalities do not explain more than 10 percent of children with autism and therefore, in 90 percent of the cases of children with autism, a thorough genetic testing with our current methods leads to a negative result. When we will have identified the genes involved, we will be able to search for these genes in affected children and their relatives and these days might come in the next few years.
8. What is the genetic risk of developing autism in the children of siblings of people with autism?
We estimate the risk in a sibling of a child with autism to have an autistic disorder is around 5-8 percent currently. If the sibling of a child with autism is not autistic and has had no developmental abnormalities in his/her development, it is very likely that the genetic risks in her/his own offspring will be very low and close to the risk in the general population. However, if that sibling has had developmental problems thought to be part of the broader phenotype of autism, or if the sibling marries with someone with similar developmental problems in his genetic background, the risk might be higher but is currently impossible to quantify precisely.
9. Do the siblings of people with Asperger Syndrome present a similar or greater risk of developing autism in respect to those with classic autism? (Parent, italy)
There are few data published on this issue which could allow us to address this question. At this point in time, it seems that Asperger Syndrome and autism breed true in families and in many ongoing studies, investigators have found families who have for instance two affected siblings, one with autism and one with Asperger Syndrome There is also evidence from some family studies that Asperger Disorder clusters in families and that the risk of Asperger Disorder in the relatives of Asperger Disorder children is raised significantly. The risk for the offspring of the sibling of a child with Asperger Disorder will depend upon the own developmental history of the sibling (whether or not he/she has had developmental problems or not) and with whom he marries. The risk for the offspring to have either Asperger Syndrome or classical Autism cannot be precisely estimated.
10. What are the best treatment and therapy options for a 30-year-old autistic person? (Parent, Spain).
Unfortunately, it is never possible to give global answers to questions such as this. Autism is a very complex condition and individuals may have very different levels of ability; the severity of their autistic features is highly variable, and personality and family background are also important factors that need to be taken into account. Support for a 30-year-old would depend very much on his or her levels of ability and personal circumstances. Thus, whereas some individuals of this age may have jobs, and even families of their own, others will remain very dependent on others for support. Intervention must be based on a detailed individual assessment with support levels being appropriate to this. For some this may involve specialist programmes in residential settings; for others it may involve help in finding and coping with work; providing adequate support for independent living, and for those who marry, or who have children themselves, some guidance for families may be necessary.
11. What is being done for adults with autism? (Parent)
Unfortunately, we have a lot of information on autism in childhood but much less for adulthood and in the third age people with autism just seem to “disappear”. There are great differences in the types of centres for adults. This is due to the fact that people’s needs change but also because there is a lack of adequate community services. There are examples of farm communities in open spaces and other examples of houses for a restricted number of people. The most appropriate solution depends on the characteristics of the person with autism.
12. I am the mother of a 3-year-old girl with autism. Can an autistic child be cured, and which is the best treatment?
Autism is generally considered to be a genetic disorder and thus there are no cures as such, any more than there are cures for conditions such as Downs Syndrome. However, with appropriate education and support facilities a great deal can be done to ensure that a child’s basic abilities are developed to the fullest extent possible. Education appropriate to the child’s particular levels of abilities and difficulties is without doubt the most important intervention for both children and families. Most successful educational programmes involve a combination of developmental and behavioural approaches, with an emphasis on structure and predictability, and strategies designed to overcome the fundamental communication difficulties that are associated with autism. The TEACCH methodology offers an excellent framework for interventions of this kind. Although there are claims that certain treatments can bring about “recovery” or “cures” for autism (these range from intensive behavioural treatments to diets, vitamins, pet therapy etc) such claims are not substantiated.
13. Is rehabilitation speech therapy indispensable for children with autism? Should it be provided by the Public Health Services? (Parent, Italy)
It is difficult to be dogmatic about the sorts of treatment that should be available for all children with autism, as the condition is so heterogeneous in terms of skills and disabilities. Many children have very good spoken language, and would certainly not need traditional forms of speech therapy. However, social communication is a deficit that, by definition, is found in all children with autism and the emphasis needs to be on devising appropriate interventions to encourage communication at a level that is appropriate for that particular child. This may mean programmes to develop spoken language, but for children who cannot reach this level, programmes that encourage signing, or the use of pictures, symbols, communicating devices, or even objects to communicate can prove very effective.
14. How do you ascertain the age at which a child no longer benefits from speech and language therapy? (Parent, Ireland).
For all children with autism, programmes to help develop communication skills are important throughout the school years. However, for some children traditional speech therapy is not required, as a spoken vocabulary is well developed. The emphasis for these children needs to be on their ability to engage in conversations and social communication more widely. Statistics indicate that very few children who have not developed spoken language by the age of 7 subsequently do so. Thus, whereas in the early school years a focus on encouraging speech may be successful, particularly if this is accompanied by augmentative forms of communication, beyond this age it is probably more productive to focus on means of improving non-verbal communication.
15. 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.
16. What are the experts' views on Pet Therapy and in particular therapy with horses and dolphins? (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.
17. I'm experience 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.
18. 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.
19. I have twin boys with autism. is it better to carry out separate or joint interventions? (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.
20. 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.
21. 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 respect?
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.
22. Are there networks and/or associations for people with autism? (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.
23. Are there different levels of autism (some children suffer more than others) and what are the different treatments and/or therapies in each case?
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.
24. My 6-year-old child is non-verbal and refuses to eat. Is there any possibility that my child will be cured?
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.
25. Doctors say that my son is 10% mentally disabled and has 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.
26. Can people with severe autism display slight intellectual disability? (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).
27. Is the complete lack of verbal communication in autism always accompanied by severe intellectual disability?
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.
28. Is there any connection between Childhood Disintegrative Disorder and children with serious regression of language and play, accompanied by their change in EEG before the age of 3 years? (Parent, Italy)
The connection that you are asking about is between Childhood Disintegrative Disorder (or Heller’s syndrome) and acquired aphasia with epileptiform findings or Landau Kleffner’s syndrome. Both of these conditions are extremely rare, and, therefore, not very well studied. However, the presentations are extremely different. In CDD the finding of EEG abnormalities is not part of the definition of the condition (as in Landau Kleffner), typically there is no medical finding (despite exhaustive medical workups), and the regression is severe and generalised (including socialisation, play, intelligence, etc.), whereas in Landau Kleffner the regression is focused on language and not these other domains. Therefore, despite great attention in the media some years ago, these two conditions appear to be in fact quite different. Having said, we don’t know what is the etiology (or causes) of CDD.
29. From studies on gaze trackings in children with autism, is it possible to presume a cognitive style that will help us to define the developmental profile of a child?
In order to outline a developmental profile and plan the most adequate form of educational intervention, it is also important to evaluate the child’s strong points, his/her abilities and motivation which, together with their cognitive style, can provide as realistic a picture as possible of the child. For this reason, it is important to integrate clinical observation with the use of evaluation instruments such as ADOS, capable of identifying the child’s abilities and difficulties.
30. Is the cognitive functioning of people with Asperger's syndrome also a valid model for people with more visible support needs?
To some extent yes, whereas in some other respects no. At the respective overall levels of intellectual functioning, individuals with autism typically do better with rote skills (e.g., memorisation of information, repetition of information) than conceptual and reasoning skills (learning abstract concepts such as time, quantity, causation, order, transforming information to solve a problem, generating new solutions), with familiar routines rather than novel situations, with non-verbal perceptual problem-solving (e.g., solving geometric puzzles) rather than verbally-mediated skills (e.g., narrating stories, understanding verbal passages), with explicit information (i.e., something that is defined to them or is pretty concrete) rather than implicit materials (i.e., something that is implied by the context of a situation, a person’s implicit intentions, or other forms of non-literal language such as metaphors, figures of speech, humour, or sarcasm. Clearly, these preferences will have different manifestations depending on a person’s level of cognitive functioning (a severely retarded individual in contrast to another person who intellectually gifted, at least in some respects). In terms of IQ profiles, lower functioning individuals typically have higher non-verbal IQ than verbal IQ, whereas higher functioning individuals have scores that are more comparable.
31. What is the real value of of cognitive testing of pre-school children with autism and are these tests accurate? (Parent, Ireland)
It is critical to establish what is the child’s current level of cognitive functioning, as this allows the clinicians to understand the child’s symptoms better and also to program adequately to that child. If the therapists or educational professionals approach the child without an empirically obtained measure of the child’s cognitive potential, there is great likelihood that they will either generate a great deal of frustration (because the child cannot possibly understand what is being said to taught to her) or a great deal of underachievement in the program (because the child is in fact capable of much more than what is being taught to her). And yes, cognitive testing of pre-school children with autism can be accurate. It depends on the utilisation of the appropriate instruments and on the level of experience of the clinician obtaining these measures.
32. To what extent do perception disorders and communication impairments interfere with cognitive functioning? (Parent, Italy)
I am not sure what you mean by perception disorders. But if you mean sensory disabilities like blindness or deafness, certainly, children with these challenges will have more difficulty in learning. It is not necessarily the case though, and it would depend on a host of factors including whether or not the sensory problem is congenital (from birth) or not, and many other things. As for communication impairments, once again, it depends on what it is meant by that, but a child without language will have major problems in cognitive functioning (given that intelligence is both verbal and non-verbal), because language is a major tool of learning and socialisation, and so forth. For individuals who may have good language have difficulties in social communication, this typically goes hand in hand with specific forms of cognitive disabilities, particularly in the areas of non-literal reasoning (see above) and some forms of conceptualisation, imagination, and the capacity for generating new strategies to solve novel problems.
33. How important are sports activities in the treatment of autism?
The important point of treatment is not to focus only on one aspect but to enhance the person’s strong points. Not everyone likes sport. We must evaluate whether sports activities motivate and interest the child. If this is the case, it is a good thing to integrate sports activities in a global treatment plan. We believe that useful activities are those in which an individual’s talent, and not their unease, can be expressed.
Prof. Fombonne adds: It is acknowledged that motory activity positively influences behaviour. Stereotypies, in particular, are reduced and certain other behaviours improve.
34. Can the inclusion of autistic children into mainstream schools be detrimental to the child without some preliminary training of teachers? (Parent, Brazil)
The inclusion of children with autism into mainstream schools is a great opportunity but can be detrimental if it is not accompanied by specific teacher training and the involvement of their future school companions. In fact, a basic social interaction disorder prevents children with autism from taking advantage of the company of children of their same age. If children with autism are not introduced gradually into the classroom environment by means of appropriate strategies, they risk being frightened, confused and anxious by the presence of other children. Moreover, receptive communication disorders, almost always present in autistic children and more marked than oral communication disorders, prevent them from exploiting lessons normally taught through verbal communication channels which are difficult for children with autism to understand.
Furthermore, children with autism are frequently hypersensitive to sounds and this may make their experience of “normal” classrooms particularly trying since they are often noisy environments.
However, despite these facts, the opportunity to integrate a child with autism into a mainstream class should be taken, provided that the characteristics, needs and learning style of the child are respected through the conscientious and specific preparation of teachers and school companions.
35. When will we have a European Autism Research Institute, supported by the European Union, with the objective of providing the best information and assistance to the thousands of families and professionals involved with autism? (Parent, Spain)
Autism-Europe has been working on this project for many years in collaboration with an association of child psychiatrists specialised in the field of research. We hope the project will be realised in the near future thanks to the chairman of this session, Prof. Ernesto Caffo, and his firm intention to collaborate with parent associations.
How is the European Union helping autistic children? Does it offer subsidies towards therapies such as speech therapy, play therapy, music therapy, ABA, VBA, TEACCH, SON RISE programme, etc.?
The European Union cannot interfere in the politics of individual nation states, nor can it substitute for them in the realisation of duties which are their prerogative, such as national health policy. The European Union can help children with autism through its non-discrimination directives (the European Commission), through a future constitution attentive to the problems of its weaker citizens (the European Parliament) and by monitoring in order that international conventions are respected in their regard (the Council of Europe). However, the European Union does not dispose of funds for social or health intervention, which is the sphere of the individual nation states.