Roberta
Marando
As of today, a treatment of choice for Autism
has not yet been identified. However, many researches show that an early and
intensive programme involving parents, including teaching of basic skills
and involving the opportunity of integrating with other children, can result
in significant improvements (Jordan, Jones 1999).
There are many treatments available today: this article is not aimed
at introducing these one by one, but rather at illustrating some of the best
known approaches, which are regarded as most effective.
TEACCH - Treatment and Education of autistic and Related Communication Handicapped Children
TEACCH
is fundamentally a State-based organisation providing services, created by
Prof. Eric Schopler and his partners in the State of North Carolina - USA,
in the ‘60s.
Assumptions and Guidelines
Autism
is regarded to be a multiple-aetiology developmental disorder, whose effects
last for life. Based on this assumption, seven principles have been identified
(Schopler, 1994).
1. Improve adjustment to the environment for every person with autism. This
principle can be achieved through two complementary strategies: on one side
by increasing individual skills, and on the other by adjusting the environment
to meet the deficiencies. Both elements are essential.
2. Parents are regarded as co-therapists: they work together with the experts
to ensure that the techniques adopted can be continued at home.
3. The functional assessment of a child’s skills is an indispensable phase
for setting up a personalised treatment.
To this end, the TEACCH Division has prepared specific tests, such as the
PEP-R test (Psychoeducational Profile Revised) (Schopler et al., 1990) which
allows both an evaluation of the child’s skills in seven different areas,
and detection of any deviant behaviours.
The AAPEP (Adolescent and Adult Psychoeducational Profile) test (Mesibov et
al. 1988) is a tool that allows evaluation of teenagers and adults with the
purpose of identifying educational requirements for successfully obtaining
a job and planning one’s life.
4. Teaching is based on structured education, which is a strategy based on
the needs, the skills and the deficiencies of people with autism. It is a
system for organising educational environments, developing appropriate activities
and helping students understand what is expected of them. Stress is placed
on visual components (since visual processing is a strength for people with
autism, which minimises the hearing processing deficits) and on the importance
of routine.
5. The fifth principle stresses the importance of strengthening the children’s
skills, whilst acknowledging their weaknesses. Indeed, when a formalised assessment
is carried out it is possible to identify acquired skills, emerging skills
(that is the skills which the child does not master yet but is in the process
of acquiring) and those which are not yet available. A good educational programme
must be based on the existing skills in order to allow the emerging skills
to develop. Teaching of not yet existing skills must be postponed.
6. Educational procedures are based on cognitive and behavioural theories.
7. The seventh principle refers to the training and qualification of professionals
who are to work with people with autism; this training has to be of a multidisciplinary
nature. Therefore professionals must be in a position to understand the full
range of problems related to autism.
Objectives
The objective the TEACCH programme aims at is to develop the skills which enable an individual to lead the most independent life possible and to take part as much as possible in community life.
Parents’ Role
Parents play a crucial role, in that they are the ones who know their children best; they therefore take part in the setting up of the objectives for the therapeutic programme, and help their children generalise in the home and in the community environment the skills their child has learnt.
Effectiveness Studies
Studies
have been published both on the specific components of the programme, and
on the satisfaction of the parents involved.
As regards the first typology, a study by Schopler et al. (1971) has demonstrated
the greater effectiveness of structured education compared to the non-structured
type. This result was further confirmed by a subsequent research (Bartak,
Rutter, 1973), by varying the structure degree in a teaching programme for
autistic students. As regards the second typology, a 1981 study (Schopler
et al.) has shown that a community-based programme, such as TEACCH, can significantly
reduce the need for institutionalising adults with autism.
ABA Applied Behavioural Analysis
The term
ABA relates to the most widely known behavioural approach within education
of people with autism. One of the best known behavioural techniques is the
“Lovaas” method1 , which is named after its inventor Ivar Lovaas, Psychology
Professor at Los Angeles University, in California.
The Lovaas method is an early and intensive behavioural therapy, based on
over thirty years of clinic experience.
Assumptions and Guidelines
Autism is regarded as a syndrome comprising specific behavioural extremes and deficiencies. The extremes are the behaviours taking place with an inappropriate intensity and frequency or behaviours which are inappropriate in themselves. Behavioural deficiencies are behaviours which are not implemented with the required strength or which are not displayed and whose absence is abnormal. Furthermore, all behavioural strategies are based on the principle that pleasant consequences may encourage a good behaviour, whilst unpleasant consequences, such as punishments, may assist in controlling unacceptable behaviours. The method requires thirty to forty hours a week of individual therapy with adequately trained operators. The teaching of all skills takes place in a structured manner, after having broken down the single general objective into small reachable steps.
Objectives
The method is aimed, starting from teaching basic skills such as sitting down and complying with simple requests, at developing speech, increasing social behaviours, promoting cooperative games and reducing the number of rituals, outbursts of rage and aggressive behaviours.
Parents’ Role
Parents’ involvement is regarded as crucial in order to reach such objectives.
Effectiveness Studies
Lovaas (1987) has reported the results of his work in a study which has shown that 47% of children who had followed the 40 hour per week programme, for 50 weeks, had subsequently successfully started school. In 1993, a follow-up study confirmed the results in time (McEachin S.J. et al.).
PECS: Picture Exchange Communication System
This method,
which was developed by Lori Frost and Andrew Bondy, was designed as part of
a national USA school programme (Delaware Autistic Program), as a means to
help autistic children to communicate. As the name itself infers, this system
is based on picture exchange to foster communication.
The method was subsequently modified and broadened and it is now also used
with adults and with other communication disorders.
Assumptions and Guidelines
The first
communicative function to be taught to people with autism is that of requesting
something, in that, unlike others, it involves a type of psychological reinforcement
which autistic people are sensitive to (Bondy et. al 1989). Indeed, obtaining
the desired object represents in itself a tangible reward which stimulates
the person to repeat the requesting behaviour.
The teaching of other communication functions based on labelling does not
prove as effective, in that it requests reinforcements of a social nature,
which initially may not represent a sufficiently strong motivation. The method
provides for six learning stages (Frost, Bondy 1994), following a first stage
during which family members and teachers select the articles that the autistic
person looks for and takes most often:
1. In the first stage the child is to learn to take one single picture and
place it in the open hand of the teacher in order to swap it with the desired
object, which is placed in a position that is visible but nor reachable. In
this phase, no verbal suggestions are used, so as not to create a dependence
on such, but only physical and gesture suggestions are used.
2. In the second stage, the child learns to move towards the teachers, who
will be at some distance from him, to deliver the picture he has picked up
3. In the third stage, the child is taught to ask for the requested object
by selecting the related picture from a number of different pictures.
4. In the fourth stage, the child learns to put together a request “sentence”
through the picture corresponding to the words “I want” and that of the desired
object and to deliver the strip on which he has placed the two pictures to
the person with whom he wishes to communicate.
5. In the fifth stage, the child learns to reply to the question “What do
you want?”
6. In the sixth stage, the child in taught to reply to the questions “What
do you see?” and “What do you have?”. Subsequently, new concepts and communicative
functions are taught.
Objectives
This method is aimed at quickly teaching to children and adults with autism functional communication abilities.
Parents’ Role
Parents are encouraged to use this method in every situation in which the child wishes to communicate.
Effectiveness Studies
Studies carried out (Bondy, Frost, 1994) have shown improvements both in children’s communicative abilities and in speach development.
PHARMACHOLOGICAL TREATMENT
Paul Gringras
(2000) stresses that two different approaches can be identified in the use
of psychotropic drugs with autistic people.
The first one is aimed at working on specific symptoms, such as for instance
hyperactivity and aggressiveness; the second one is aimed at working on the
core of autism-related alterations.
Assumptions and Guidelines
As regards
the first approach, the basic assumption is that “no drug can correct the
altered brain structures or nervous connections which appear to underlie autism”
(NIM, 1997). The use of drugs is aimed at addressing various types of symptoms
which may be associated with autism, such as hyperactivity, compulsiveness,
rituality, sleeping problems, self-injurious behaviours and aggressiveness.
Such symptoms do not only negatively affect the person’s life, but may also
represent a source of distress for the family and for those who take care
of the person. Furthermore, they can hinder the acquisition of new abilities.
(Gringras, 2000). Nevertheless, several authors stress that the pharmacologic
approach cannot be regarded as an alternative to other educational tools (Gringras,
2000; Masi et. al 1999; Mc Dougle, 1997).
An overview of drugs currently used in Pervasive Developmental Disorders can
be found in Masi et. al (1999). As regards the second approach, drugs are
regarded as the means to act on the crucial symptoms of autism in the areas
of social interaction, of speech and of restricted or repetitive behaviours.
According to Gringras (2000), examples of drugs belonging to this category
are naltrexone, phenfluramine and secretine. In all three cases great sensation
was caused by the idea that a cure for autism may be found. The hypotheses
underlying their success differs, ranging from the theory according to which
there is an excess of opioid activity in the brain (naltrexone), to the reduction
of serotonin levels (phenfluramine). Furthermore, we ought to keep in mind
that, before starting a pharmacological treatment, one needs to carefully
assess the risk/benefit ratio, in view of the side effects involved.
Objectives
The use of drugs in people with autism is aimed at controlling behaviours which may negatively affect their quality of life, once specific educational programmes have proved unsuccessful.
Parents’ Role
In literature there is no particular reference to the major role plaid by parents when one’s child starts a pharmacological treatment. I am referring, for instance, to the need to monitor the intensity and frequency of the symptom thorough specially designed control sheets, before, during and after drug administration.
Effectiveness Studies
With reference
to the first approach, Masi, Marcheschi and Pfanner (1999) emphasise that
the drugs which are currently employed prove effective in some subjects and
not in others, and that they can occasionally even worsen the situation. The
great heterogeneity of people that can be found within the autistic spectrum
is thought to be the cause for differing reactions to drugs. As regards the
second approach, the studies that have been carried out have provided evidence
that phenfluramine and naltrexone have no effect on the crucial symptoms of
autism (Mc Dougle, 1997).
As regards secretine, a “double-blind” trial (Sandler et. al, 1999) has not
only ascertained the absence of differences between the experimental group
and the control group after a single injection of secretine, but has also
shown that both in the group in which secretine was administered and in the
placebo group there was a substantial reduction in the severity of symptoms
in time. It is therefore quite obvious that double blind trial studies are
essential in order to evaluate the effectiveness of a drug (Gringas, 2000;
Grandin, 1998).
NON-CONVENTIONAL APPROACHES
This category includes certain treatments which, when subject to serious effectiveness studies, have not proved able to assist people with autism, such as for instance the Facilitated Communication and the Delacato Method (NIH). I will only briefly touch on the Facilitated Communication method, in view of its technical diffusion and of the sensation caused.
Facilitated Communication
Facilitated Communication (FC) is a method which was first devised in Australia, during the ‘70s, thanks to the work accomplished by Rosemary Crossley (Crossley, McDonald 1980), as a means for helping children with physical and/or mental disabilities to communicate; its use was subsequently extended to people with autism. Douglas Bliken, who was the first to introduce the FC technique and its applications among people with autism in the USA, states that “the communication difficulty appears to be of a practical rather than cognitive nature” (Biklen 1993 page 13). The use of FC with autistic people is therefore based on the assumption that many of the existing difficulties are due to movement disabilities (Attwood 1993, Hill, Leary 1993) rather than to social or communicative deficiencies. FC takes place by typing letters on a keyboard and involves the presence of a “facilitator” supplying a support (which is both physical and emotional) and who initially supports the hand or arm of the person. Many studies have been carried out on this method, showing that the message produced reflects in fact the thoughts of the facilitator (e.g.: Crews et. al, 1995; Regal et. al, 1994; Smith et. al, 1994; Wheeler et. al, 1993).
CONCLUSIONS
When a family receives a diagnosis of autism for a child, often a long research starts in order to find the best course of action to be pursued. It may not prove easy to make a choice among the enormous variety of treatments existing today. It is therefore essential on one side to put together as much information as possible and, on the other, to approach specialists, so as to find one’s way towards methods based on serious scientific researches, which have been subject to effectiveness studies. Furthermore, it is important not to waste time, since one fact on which the whole scientific community agrees today is the need for an early intervention with a good educational programme. Translated by interpres sas
Roberta
Marando
Service Manager of the Centre For Diagnosis and Treatments- Children and Autism
Foundation (Italy)
1 This method is also know under the following names: · Prof. Lovaas’ UCLA (University of Los Angeles) Program · Home Based Behavioural Intervention · UCLA model for applied behavioural analysis
