AUTISM : CURRENT ISSUES 25
This latest set of summaries begins by further reference to the incidence of autism, with some suggestion that some or much of the observed increases may be real rather than a function of changed diagnostic criteria or practices.
Subsequently, there is a further insight into the practical difficulties experienced by children or young people with autism in the mainstream school (and problems in always consulting with children with special needs, including autism).
The final section describes recent trials with the drug Risperidone with tentative but positive findings reported.
Incidence of Autism
There is a continuing debate whether the rise in the number of children who are diagnosed with autism represents a true increase in the incidence of this condition, or whether it is a matter of increased sensitivity of diagnostic procedures, as well as the use of the concept of autistic "spectrum" which may be a less threatening diagnosis to offer and to accept.
The impression gained hitherto by the present writer (MJC) from published material and opinion was that the hypothesis concerning better diagnostic procedures was more favoured, but a recent study completed by the University of California takes a different view.
The report completed by Byrd et al (2002) and made public during the latter part of October cites a dramatic increase (around 270-280%) in the number of children with autism entering treatment centres in California between 1987 and 1998. The authors go on to argue that this pattern cannot be explained away in terms of misclassification of cases (a confounding of autism with mental retardation), some statistical artefact, or increased awareness and improved detection methods.
They also found that more than 90% of the children in the survey were native-born, thus refuting the possible hypothesis that the rise can be explained by the migration of children with autism into California.
Rather, it was held that the incidence of autism has actually increased although there is no means yet available of explaining the increase. Reference is made to the belief that many children are born with a predisposition to autism which may be triggered by some as yet unspecified environmental factor.
This evidence applies only to the state of California, but the authors acknowledge how reports cite an apparent rise in incidence across the whole of the country and elsewhere in the world. For example, figures from the Autism Research Centre at Cambridge University refer to an incidence of around 1 in 2500 in 1997 which is in sharp contrast to the described incidence of around 1 in 100 in 2002 !
One continuing and contentious area is that of the hypothesised negative impact (a possible trigger?) of the MMR vaccine which, one hypothesis goes, may operate through the weakening of the gut wall, and which is also implicated in stomach or intestinal disorders.
However, a study completed at the University of Boston and reported in the BMJ (October 2002), reviewed evidence on British children born after January 1988 and diagnosed with autism before the end of 1998. The conclusions held that there was no justification for supporting any alleged link between these inflammatory bowel conditions and autism, and reinforced the view that MMR has no role in the aetiology of autism.
The children diagnosed with autism were each matched to 5 non-autistic children with an analysis completed of the time between their MMR inoculation and onset of any gastrointestinal symptoms.
The authors found no increase in the history of such symptoms or of food intolerance in the target sample, and no time link between MMR and any symptoms of intestinal problems in children who were eventually diagnosed with autism.
(They did not rule out the possibility of an autism-gastrointestinal disorder linkage, but held that any cases where such a link was demonstrated would be rare.)
Mainstream School Inclusion and Children with Autism
Some recent publications have further highlighted the theme consistently plugged by the present writer (MJC), viz, that inclusion must mean more than simply having the pupil with special needs attend the mainstream school. There is a likely requirement also for modifying the curricular demands in terms of teaching/learning goals and style; and, in the case of the children and young people with ASD, there may also be social or organisational issues which must be taken into account.
A recent book, written by a 13 year old with Asperger Syndrome (Jackson. 2002), has highlighted what is described as a minefield whan it comes to the school setting.
Initially, there is an emphasis upon the range of types and severity of needs which may all fall under the general label of Asperger or ASD with implications for individual observations and planning.
Subsequently, the author describes his problems in respect of not always understanding the purpose of tasks set, a slower rate of working, and weaknesses in memory or in self organisation. Teachers and other pupils may appear to have a clear purpose but he does not appreciate what that purpose is; and he does not recognise, as others appear to do instinctively, where to go, whom to talk to, and what to do next.
Reference is made to the sessions with an occupational therapist where particular exercises are practised, but the author describes how one minute he is sitting in a classroom, and the next minute he is taken elsewhere for these sessions which may include throwing beanbags at boards, but nobody explains why. It was found unsettling to become occupied with some task and then suddenly to have to change.
A plea is made for helping the pupils with ASD by always telling them what is going to happen and why, and for making allowances to match the particular disadvantages experienced.
Homework is cited as a particular problem, partly because scholastic work is seen as what is done at school rather than at home ... " school is school, and home is home " ... but if homework has to be done, the advice offered includes seeking to complete the assignments during the school day, perhaps at lunchtime, or during a period immediately after the end of lessons; if the work cannot be done at school, then it might be helpful to do the homework at a friend's house rather than at home; if it has to be done at home, then it is necessary to establish a firm routine for a place and time with which nobody interferes; and it may help if homework is seen as revision rather than as an extension of school work.
The question is asked whether everyone has to do everything, and reference is made to the problems associated with games or PE especially in the case of a pupil with some motor/dyspraxic-type difficulties, with the subsequent question why one cannot find out a given pupil's strengths and focus on them. The example is given of a possible preference for, and greater ability in, individual sports such as running or climbing, or anything that does not involve teams and lots of interaction with others.
The conclusion holds that square pegs are not going to be fitted into round holes, and there is a hope that the roundness of the hole can be squared-off to fit individual needs and styles (with the possibility of being taught at home under the "Education Otherwise" scheme as a reassuring fall-back alternative).
A similar albeit much more strongly expressed view is contained within the article written by Osler and Osler (2002) which ponders whether there is a real appreciation of the concept of special educational needs and a failure on the part of (some) schools to anticipate and act upon the needs of some pupils/students. While one might work towards modifying some of the effects of Asperger Syndrome and helping the pupil to acclimatise into school routines, there is a need for the school itself to undergo some changes if inclusion is to be meaningful.
The year 11 pupil with Asperger Syndrome,who is the subject of the article, was said first to stand out because of some experience of being teased and bullied, and because of epileptic problems which were usually mild, but which prompted the school to rule that he could not participate in residential activities unless accompanied by his mother (!)
He was also excluded from school reportedly because of the belief that the school could not manage the episodes of seizures and that he should not attend school unless there was some guarantee that he would not experience a seizure during the school day.
It is reported that actions were agreed at subsequent meetings, such as organising a mentor, setting specific learning targets to help catch up missed work, and ensuring the opportunity to sit mock examinations, but these actions were not carried out and, instead, a second exclusion was made.
At a review, reinstatement was accepted following the LEA's obtaining the services of a nurse; although the irony was that specialist medical advice had diagnosed the seizures as stress related so that being accompanied by a nurse would increase rather than decrease the probability of seizures!
While it is recognised and acknowledged that one may only have one side of the picture, the pattern of uncertainty over who is actually responsible for making and implementing actions, and communicating, is worth highlighting ... the headteacher, senco, a shared responsibility among all staff?
The lead author pondered whether an underlying issue is that of ensuring a maintenance of league table positions and the over-riding influence of the "educational market".
She wondered exactly what is meant by "valuing all students" and went on to argue that "a popular school in a relatively affluent area with a good reputation and sound GCSE results can confidently demonstrate academic success and receive a favourable inspection report while not addressing the inclusion agenda".
One can only repeat that this may be an atypical case and that it would be desirable to read also the history of the case from the point of view of the school's senior management; however, there does appear to be support for the general principle of a balance between expecting a pupil to fit into the school's routines and modifying demands and expectations to match the particular needs of that pupil. Seeking to fit a child into the school without due regard to his particular style or need, or taking a medical model, does not seem helpful.
If more and more children with relatively severe special educational needs are to be admitted to mainstream schools, there is a need for a greater range of curricular forms, objectives, and strategies and, thus, some significant cultural shifts in those schools.
With this in mind, one notes the ongoing work based at the University of Bristol (Webster 2002) which has enabled nearly all young children with autism to take up places in local mainstream schools.
What has been critical is the establishment of tailored therapy for the children based upon initial assessments of developmental level. The resulting programmes included applied behavioural analysis to work towards specific behavioural objectives, PECS, visual timetables, and "contingent problem solving" which involved devising games responsive to the particular needs of ther child. The example is given of setting up a bubble-blowing game for children with limited eye contact and social skill which depended on eye contact and turn taking.
The programmes are organised in the family context and in liaison with the LEA with a view to managed transition into early years' settings. The next step will involve following the children in their infant or primary schools in order to determine the most effective strategies and environment. The children will need specialised support and help for much of their school careers, but it is hoped that inclusion will be facilitated by this early intervention, and by the individualisation of the planning.
One might argue that this latter point is the key one .... the clinical rather than categorical approach and the use of varied targets and resources to meet those targets .... using the provisions available most efficiently to help the child (rather than simply seeking maximal one to one support to try to fit the child into existing and unchanging routines).
On a related topic, Preece (2002) describes how children who receive support from social services should be consulted by staff as a legal right. However, his review of findings indicates that children with special needs tend to be treated as a homogeneous group with insufficient regard paid to the particular types of need; and that consultation has tended to be held largely with those children most able to express themselves and to share discussion ... with negative implications for those experiencing autistic disabilities.
He refers to the frequency with which parents of children with disabilities including autism (who may be subject to short term respite care) are involved in discussions, but the children themselves rarely get the chance to express their feelings and perspectives.
The issue of consultation with the ASD children and young people may indeed be challenging given the particular characteristics involved. As summarised by Garfin and Lord (1986), they include a lack of intrinsic motivation to communicate (on a topic introduced by someone else, anyway); difficulty in grasping abstract concepts; literalness; and some weakness with lengthy or relatively complex verbal interchange.
The advice from a range of sources (including Beresford 1997) is that adults involved in consultation with children with special needs should be known, familiar, and trusted. Further, to avoid any accusation that the children may be put under any pressure to produce the desired response, it is suggested that the interviews should not be conducted by the adults who are directly involved with the facility/service in question, nor that parents should be present. Teachers may be in the best position to consult with the children given their trusted role and their separation from short term care services.
Preece's own data plus evidence from published sources highlighted several common factors among a number of case studies :
In other words, some unitary or generic approach will not provide for all children, and consultation with the children with ASD need to be approached in the light of their particular needs and style. These particularly involve limitations in social understanding and communication, restricted interests, and resistance to change.
There is further support for the principle of ensuring "an even playing field" for all the children who are being considered for some provision in terms of gaining their feelings and wishes; but, as in educational provisions, equal opportunity does not usually or necessarily mean identical opportunity.
Medication (Risperidone) in Children and Young People with Autism
While the triad of impairments in autism is well noted, it is recognised that children may vary in respect of the range or severity of symptoms or associated problems.
Hughes et al (2002) suggest that, within the clinical presentations of ASD, there may be an element of aggression (perhaps related to anxiety or uncertainty or resistance to any threat to one's personal space) and this has been managed largely through behavioural methods, with medication relatively little used hitherto.
The drugs that have been found to have some benefits are those which have an impact upon dopamine and seretonin neurotransmitter systems. In particular, and among adult subjects, Risperidone has been used effectively within controlled trials to deal with impaired social behaviour, interfering repetitive behaviour, and aggression.
However, while evidence for its usefulness among children has been claimed, there are no controlled and systematic studies cited.
Recent case studies described by these authors have demonstrated the successful management with Risperidone of aggressive behaviour in children and adolescents with autism.
It was found that a combination of medication and psychotherapeutic intervention achieved positive outcomes when the psychosocial therapies alone were not effective. The medication was thought to give respite from the symptoms to allow the other therapies to have more effect.
Improvements were also noted in problematic behaviours such as overactivity, social withdrawal, and stereotyped behaviour.
The authors concluded that, while the number of cases was small and that there was no standardised scale for assessing symptom change, there were sufficiently encouraging results in terms of positive response to low maintenance dosage and satisfactory tolerance of the medication to justify further evaluations in larger and properly controlled studies.
One major study that has taken place is described by McCracken et al (2002) who used Risperidone with a sample of 100+ children and adolescents between the ages of 5 and 17 who met the DSM-IV criteria for autism, and who displayed tantrums, aggression, or self-injurious behaviour.
The 82 boys and 19 girls who were included in the study (once participants already receiving medication or those diagnosed with comorbid conditions were ruled out) were randomly assigned to receive either Risperidone or a placebo. Performance was rated by repeated use of behavioural checklists.
The improvements shown by the medication group over a 2-month period were significantly greater than those of the control group. There was a 57% reduction in the irritability score compared to 14% in the control group (p.0.001); and the difference in rates of responsiveness was 69% compared to 12%.
23 out of 34 of the participants who had a positive response to the medication at 8 weeks were still showing the benefits after a further 6 months.
The side effect of weight gain was noted, but it was held not to be significant in this population. However, there were also more signs of fatigue or dizziness in the target group hence the need for very close monitoring if the medication is used with children and young people especially if it is extended beyond a short time scale.
The authors commented on the speed with which the medication brought about effects (with the target and control groups diverging sharply by week 2) thus supporting the view of significant potential benefits to be assessed by longer term studies.
M.J.Connor November 2002
Beresford B. 1997 Personal Accounts : Involving Disabled Children in Research. London : The Stationery Office
Garfin D. and Lord C. 1986 Communication as a social problem in autism In Schopler E. and Mesibov G. (Eds) Social Behaviour in Autism. New York : Plenum Press
Hughes D., Cunningham M., and Libretto S. 2002 Risperidone in children and adolescents with autistic disorder and autism. The British Journal of Developmental Disabilities 48 (95) 113-122
Jackson L. 2002 Freaks, Geeks, and Asperger Syndrome. London : Kingsley Publishers
McCracken J., McGough J., Shah B., et al 2002 Risperidone in children with autism and serious behavioural problems. New Englan journal of Medicine 347 314-321
Osler O. and Osler C. 2002 Inclusion, exclusion, and children's rights. Emotional and Behavioural Difficulties 7(1) 35-54
Preece D. 2002 Consultation with children with ASD about their experience of short term care. British Journal of Learning Disabilities 30 97-104
Webster A. 2002 Tailored education programme helps autistic children into mainstream school. Reported by Griffiths J. in Medscape (Reuters Medical News : September 2002)
© Mike Connor 2002.
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