What is your opinion on autism being 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.
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.
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.
Food intolerance, however it is defined, is a relatively frequent condition and many people in the population (non autistic subjects) experience food intolerance. It is therefore expected that subjects 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 the 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.
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.
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 is documented in the literature in a percentage of 10% of cases.
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.
It seems that often children with autism do have bowel symptoms although the meaning of these symptoms is not entirely clear. There are several studies looking at the incidence of bowel disorders in children with autism which have failed to document an increased in the incidence of serious bowel disorders in children with autism. Bowel symptoms is another issue and these symptoms seem more frequent in samples of autistic children. Few studies have controlled the diet of children with autism which is sometimes quite restricted and might explain why they have more of their share of diarrhoea and constipation. Balancing the diet is an important approach to managing bowel problems in children with autism. Constipation must be alleviated and besides the use of laxatives, other simple techniques can be helpful such as for instance, drinking prune juice daily. If a child seems to be in pain due to his bowel or stomach symptoms for several days, then he should be medically investigated as he might have a medical problem such as gastro-oesophagal reflux (pretty much like other non-autistic children might experience) but the recognition of this might be delayed in children with autism as they have difficulties to communicate their pain sensations and to explain what they are going through.
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.
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% of children with autism and therefore, in 90% 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.
We estimate the risk in a sibling of a child with autism to have autistic disorder to be around 5-8% 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.
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 Disorder. 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.
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.
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.
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. Unfortunately I am not familiar with the Norwegian method called TIPO.
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.
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.