INTRODUCTION
One important aspect in the treatment of psychopathologies such as autism is the retrieval of information about each individual for subsequent analysis. This data is collected on a regular basis. In the case of severely affected autistic persons (SAAP), the affliction normally generates a large quantity of data which must later be retrieved, using systems that enable an in-depth analysis at a reasonable cost. When the SAAP is treated in several different services and/or on an uninterrupted twenty-four-hour-a-day schedule, logically the issue under discussion becomes more complex.
This is the situation at the La Garriga
Network of Services for Autistic People, where every day the users
generate a substantial amount of highly diverse data due to the
operation of both day centres and residences.
LA GARRIGA NETWORK OF SERVICES FOR AUTISTIC PEOPLE
Owing to the severity and the extent of the disturbances of autistic people, appropriate therapeutic interventions should be initiated as soon as possible, and they should be intensive, specific and multi-disciplinary in nature. In the case of the severely afflicted, that is, those who present high levels of pathology and severe or profound mental deficiency, the network of services constitutes an option which is well suited to their special characteristics.
The general objective of the La Garriga
Network of Services for Autistic People (the town is 35 km from
Barcelona) is to provide an integral and flexible response to
the problems of the SAAP. This network is integral, in that the
facilities are not limited to serving particular needs or specific
age groups, rather the aim is to meet all the needs of the SAAP
throughout the entire life cycle; and it is flexible, in that
the use of each of the services by each SAAP always depends upon
the special requirements and characteristics of the both the individual
and their family.
The following services are currently
provided:
| SERVICE | AUSPICES OF THE SERVICE |
|---|---|
| Diagnostics (E.A.P., specific) (CERAC) | Associació CERAC |
| Day centre for school-age individuals (CERAC) | Associació CERAC |
| Day center for adolescents and adults (TERLAB) | Associació ASEPAC |
| Therapy service for holidays (S.T.V.) | Associació ASEPAC |
| Residences (Llar Cau Blanc and Llar Cottet) | Associació APAFACC |
The diagnostic team is multi-disciplinary and can therefore conduct a neurological, psychopathological, psychoeducational, psicopedagogic and social-family evaluation of the individuals in care, and the team is always adapted to the nature of the demand.
The day centre for the school-age groups (CERAC) serves SAAP from age three to age sixteen or eighteen. The individualized programs fulfil the therapeutic need (both psychological and medical) as well as the psychoeducational requirements of the students.
The day centre for adolescents and adults (TERLAB) serves SAAP aged sixteen and older. Because of the severe disturbance of the SAAP, the activities programs are focused on occupational therapy rather than vocational training. The duration of these activities is usually rather brief (thirty minutes), so as to maintain motivation at an operational level, and they are quite varied in nature.
The residences (LLAR CAU BLANC and LLAR COTTET) serve the following functions:
The function of the S.T.V., the therapy service for holidays, is to substitute for the day centres during long vacation periods and holidays.
The benefits of a group of services such as these are the following:
PROGRAMS FOR THE STUDY AND TREATMENT OF AUTISM AND OTHER GENERALIZED DEVELOPMENTAL DISORDERS (PETAPI)
The programs for the study and treatment
of autism and other generalised developmental disorders (PETAPI,
derived from the initials -in Catalan- of programs for the study
and treatment of autism and childhood psychoses) comprise a set
of tools designed to process the information generated in tracking
the SAAP - and individuals with similar clinical pictures - who
are in our care, based on the principle that information which
cannot be retrieved is information lost. The difficulty of processing
all this information in order to draw conclusions which can be
applied in treatment (the modification of both psychological and
pharmacological therapies, the restructuring of activities, etc.)
had been prompting us for several years to search for a "method"
of storing and analysing all of these data.
However, first and foremost, the data would have to fulfil a number of conditions:
CHOOSING THE SOFTWARE PROGRAM
After designing several different record forms, studying various software possibilities and experimenting with a few of them, we decided on the DBASE program. This initial exploration took place in mid-1989, and at the present time we are working with DOS DBASE V.
We are currently using DBASE V for the following reasons:
At the time we were also considering the possibility of working with a program in a Windows environment. But in those days, we did not regard this software as feasible because of its high cost, the impossibility of compiling programs easily (the programming languages then in existence were relatively difficult), and the slowness of Windows in comparison with the programs written for DOS.
However, now the circumstances have changed considerably, as a result mainly of the appearance of Windows 95 and the new programming languages. That is why we are presently studying the possibility of using PARADOX, or creating a new program based on VISUAL DBASE or DELPHI.
Like all software programs, DOS DBASE V has its advantages and drawbacks.
GENERAL FEATURES OF THE PROGRAM
Using the DBASE V programming language we developed the program that we normally use to track all of the SAAPs who are cared for in our network of services. This program, which we named PETAPI, entails nothing more than a rigorous and simplified plan for a series of regular operations, whose aim is the in-depth and exhaustive tracking of every SAAP.
The great advantage it has (which is also a slight drawback) is that the software is completely closed for the end-user (for the programmer there are practically no limits). This means that an individual who wishes to use the program is limited exclusively to the options on the menus. It is also worth mentioning that each educator has an access code, so that access to a particular section of the program can be restricted.
This aspect, in principle a slight inconvenience, is in reality a great advantage, since the data cannot be modified or changed by anyone without the proper access code. The program is very easy to use for anyone with elementary computer skills without running the risk of inadvertently modifying or changing the pre-existing data. Thus, there is no need to designate a single individual to enter, retrieve or analyze the data.
Nevertheless, it is woth stressing
that the tracking of SAAP is a highly complex process and cannot
be handled by a simple software program. From this standpoint,
what the PETAPI program provides is an initial approach to the
information, a partial overview, preparing the data for the creation
of a chart or for subsequent analysis. But some cases call for
data analysis in far greater depth, and this is currently conducted
directly from DBASE V.
Basic technical features
Like DBASE V, the PETAPI program requires:
- An IBM or compatible computer, 386SX or later
- A monochrome, CGA, EGA or VGA monitor
- 4 Mb of RAM, minimum
- 11 Mb hard disk
- DOS 3.3x, 4.01, 5.0, 6.0 or later
Specifications of general interest
However, the fact that the system
memory can impose considerable limitations on the program should
be kept in mind. For that reason we now believe that for the
proper operation of the program, a Pentium computer with a
minimum of 18 Mb of RAM is needed.
THE FUNCTIONING OF THE PROGRAM
With regard to the operational aspects
of the program, we have divided these into two large blocks, each
of which has its own sections.
General Menu for the PETAPI program
Figure 1
The first block is related to the information processed in the medium or long term and basically encompasses the medical history and the different types of reports on the SAAP.
The second block, which is more interesting, includes the information that is processed in the very short term or even daily. This includes all the medical data (the health file, temporary cures or treatments, basic, additional and temporary medications, visits to doctors and hospital admissions), the records (daily, specffic behaviours, epileptic seizures, etc.), and psychoeducational programs (therapy guidelines and the P.I.R. -the official name of the psychoeducational and/or occupational therapy programs for people severely affected by autism and similar clinical pictures).
The program has a main menu. Each
heading af the main menu has its own submenus, and each of those
has a third-level menu. Figure 1 shows the main menu and the
different submenus of the program.
MEDICAL DATA
The Health File
The Health File (H.F.) contains all
the information related to the medical and psychiatric history
(Figure 2) of the SAAP cared for in La Garriga: psychopathology
(diagnosis, disruptive behaviours, eating disorder symptom, sphincter
control, etc.), medical and surgical pathology (allergies, drug
intolerance, epilepsy, asthma, diabetes, infections, diseases
af the musculoskeletal system and the skin, etc.), vaccination
dates, other data of medical interest and a brief case history
of the illnesses and interventions undergone by the SAAP
Figure 2
The Health File is very useful since
sometimes the SAAP cared for in our network of services must be
treated by specialists who are not their usual heath-care professionals
(for instance, an emergency admission to a hospital or a simple
visit to an E.N.T. specialist). Whenever necessary, the H.F.
is released to the outside specialist to provide her with an overall
picture af the SAAP she is treating at that time. It is worth
mentioning that in these cases, attached to the H.F. is a record
af the patients regular medication and all visits to doctors (whether
general practitioners or specialists), as well as other information
af general interest.
Temporary cures and treatments
Distribution of the temporary
remedies and treatments register in 1995.
Figure 3
Quite aften SAAPs require various temporary cures and treatments. The tracking covers slight injuries, illnesses, medical factors which must be taken into account at all times (allergies to very common medicines, such as aspirin, etc.), factors to be considered in providing meals (special diets for some sort af digestive complaint, etc.) or clothing (the skin of very sensitive feet), as well as aspects of habitual treatment.
Figure 3 shows the distribution of the temporary remedies and treatments provided throughout 1995. The largest group (55%) represents various kinds af injuries, most of which were the outcome of the behavior problems presented by the majority of the SAAP cared for in la Garriga.
As a result of the introduction of this record for tracking temporary remedies and treatments, the duration of many of these treatments has been considerably shortened, reduced practically by half from an average length of fifteen to twenty days to an average length of five to ten days. We have also found that since this record was introduced, the number of injuries involving complications has been far lower than the figure prior to its use.
In our opinion these advances are due to the fact that the structured record of the temporary remedies and treatments has made our tracking far more accurate, and so we can apply more effective remedies.
Furthermore, this record provides each educator, the moment they takes charge of the SAAP, with information on a large number of factors which, in many cases, may have consequences for the treatment of the individual. Bear in mind that the SAAP cared for in La Garriga are generally there twenty-four hours a day, which means that every day each SAAP is in the charge of three different educators (morning, afternoon and night).
Also noted in this record are a
large number af factors which have affected the SAAP and which
occasionally influenced the evolution of her disorder.
Basic medication
Some of the SAAP take psychoactive
drugs on a regular basis. This record is a detailed
account of all the changes made in the basic medication
of the SAAP, and it enables us to make reliable evaluations of
the efficacy of different psychopharmacological treatments. Furthermore,
by consulting this record we can always obtain information on
the progress of these treatments during a given period af time.
Case A. Decrease in self aggression
by modifying the basic medication.
Figure 4
On this point, it is worth stressing that when the basic medication of the SAAP must be adjusted, close coordination between the psychiatrists and the administrators af the different centres is of crucial importance. For that reason, every week at La Garriga a multi-disciplinary team reviews the basic medications of various SAAP.
Figure 4 shows the virtual disappearance
of self-injury in one of the SAAP. In this case, one drug was
eliminated (sinogan-100) and replaced by another (haloperidol).
With respect to the other variables which might have influenced
these episodes of self-injury, for example, the patient's home/residence
regimen, their regular educators, or the psychotherapy guidelines;
none of them were modified during that period of time.
Additional medication
This record is used to keep track
of all of the medications that a SAAP may need from time to time
(e.g., to treat extreme agitation, an epileptic seizure, pre-menstrual
pain, etc.).
Case AB. Extra Medication according
to the time of day
Figure 5
In addition to the name af the drug administered to the SAAP, there is always a record of the dose, the dosage schedule and the reason for its administration. Besides allowing us to maintain an exhaustive list af the additional medications vjhich have been administered to a SAAP (ranging from neuroleptic drugs to a simple aspirin), we can also assess the efficacy of these temporary pharmacological treatments and decide whether or not that individual's basic medication should be modified.
Figure 5 shows the daily dosage schedule
of the additional medications of one af the SAAP over a six-month
period. These medications were administered during attacks of
psychotic anxiety, which, as can be seen very clearly, were concentrated
between 1.00 pm and 3.00 pm and between 6.00 pm and 7.00 pm.
On the basis of this information (and data from other records),
a change was made in the individual's basic medication, which
brought about a spectacular reduction in these attacks.
Temporary medication
Here we record each and every medication which may always be needed by a SAAP, but only during certain periods.
This section covers all those medications
which are administered to treat temporary conditions (colitis,
gastritis, dermatitis, etc.). The record also enables us to evaluate
the extent to which a particular drug (or the complaint which
a particular drug is being used to treat) may affect the progress
of a given individual.
Case AB. May 1995. Morning.
Figure 6
Since this record has been introduced,
we have found that some ailments (when an individual takes some
kind of medication on a temporary basis, it is because they are
suffering from a complaint) have a powerful and direct influence
on the behaviour of SAAPs. For example, Figure 6 shows a very
irregular line plotted from the General Daily Record in which
there is a period of relative stability. This corresponds
to a time when the SAAP was taking a series of drugs on a temporary
basis as treatment for a specfic ailment.
Visits to doctors
From time to time, SAAP present various
illnesses (Iike the rest of the population) which require a doctor's
care. Every time a SAAP is attended by a doctor (this category
includes general practitioners, dentists, specialists etc.), it
is noted in this record. In addition to the date of the visit,
the account includes the centre where the individual was treated,
the name of the doctor and of the accompanying persons, the reason
for the visit, the diagnosis and the treatment, if any.
Distribution of external medical visits in 1995 by affectation
Figure 7
Regarding this point, a factor should be stressed that has become increasingiy obvious: the long-recognized difficulty of diagnosing physical illnesses in this population, which is due to a number of different circumstances: a very high pain threshold, communication deficits, altered mood states which can mask the symptoms of an ailment, etc. And we must confess that when no clear symptoms appeared (fever, reddening of the throat, diarrhoea, vomiting, etc.), in most cases we were unable to make an accurate diagnosis.
Figure 7 shows the distribution of
outside medical visits during 1995. One of the most important
blocks is related to monitoring. Normally, after
diagnosing some illnesses (of course, not at all serious),
the SAAP must be monitored to prevent possible complications,
and this is a standard practice.
TREATMENT PROGRAMS
Therapy guidelines
Therapeutics Directions
Figure 8
This section contains the general
treatment guidelines for each SAAP. The therapy guidelines (Figure
8) consist of several parts: general treatment, behaviour to be
reinforced, behaviour to be redirected or eliminated, factors
to be considered concerning meals, clothing, activities, medical
aspects, sphincter control, and other notes of interest. The
therapy guidelines, hence, encompass all the strategies
to be used by the educator with each individual. In addition
to enabling a clear definition af the factors that may have consequences
(both positive and negative) for the progress of the SAAP, we
can evaluate the treatment received by the individual during a
certain period of time.
Psychoeducational programs
The P.I.R. entails a wide range af objectives (general, specific and operational).
The P.I.R. for the SAAP contains
different sections, each of which has its own general, specifíc
and operational objectives. Furthermore, because operational
objectives are easy to evaluate, each one has three levels of
independence in task performance: autonomous, with verbal assistance
and with physical assistance.
RECORDS
Individual Daily Record
The individual General Daily Record was the first computer record to be introduced at la Garriga. The first model of the record was created in late 1989, and in the course of time it has been modified and perfected until, by the end af 1994, we had a highly stable model. Nevertheless, in early 1997 we plan to conduct another in-depth review of that model on the basis of the results obtained during the two years of "full performance" operation.
This record has a total of thirty
sections, each of which has several subdivisions. In total, there
are 102 variables which can be interrelated. These thirty sections
are grouped in different blocks: general mood state, physical
irregularities or complaints, epilepsy, eating, stereotypy, behaviour
problems, the administration of additional drugs, and sphincter
control. Though all the sections are valid in themselves,
to interpret the data correctly, it is crucial to have
an overall view of these variables. In any case, this record
can provide information at any given moment on the evolution of
sphincter control or the duration of menstruation in a particular
individual. Thus, for example, the daily record, together with
the basic medication record, has been used on a number
of occasions to monitor the frequency of defecations in different
SAAP. (It is common knowedge that one of the potencial side effects
of some psychoactive drugs is constipation, a condition which
may cause physical discomfort in some people and have a negative
effect on their general condition if preventive measures are not
taken vvith respect to the diet.)
Case B. February 1995. Morning
Figure 9
At the present time the record is filled in twice a day (morning and afternoon), a task that takes an experienced educator less than a minute to complete.
A key benefit of this tool that merits attention is that it provides us with an overall picture of the progress of a particular individual over a given period of time, with a high level of objectivity. But it must be born in mind that, owing to the great number of factors and variables involved in the treatment of SAAP, the effective use of this record, as mentioned earlier, depends upon the proper interpretation of the data.
Figure 9 shows the evolution of behaviour
problems in one of the SAAPs over an entire month.
Specific behaviours
Case C. Distribution of behavior problems according to the day of the week.
Figure 10
Frequently SAAPs present a number of disruptive behaviours which are difficult to treat, since we lack sufficient information on the circumstances in which they developed. The purpose of this record is to enable a functional analysis of these behaviours as a step prior to treating them, and therefore it has been designed to include notes on the various parameters of the behaviour to be assessed, among them: the type, its intentionality, frequency and duration, as vvell as all the relevant circumstances that precede the behaviour, that occur simultaneously with it or that follow it. Among other variables, the following are considered: the day of the week and the time it occurs, the apparent reason for it, factors related to the setting (distance from the educator, the number of people present at the time the behaviour started, the noise level, etc.), the reaction of the educator to the SAAP, the repercussions of the behaviour, whether the behaviour occurs randomly or is associated with other patterns, etc.
We consider this record to be highly useful in that, although on some occasions it did not lead us to any concrete solutions to the problem presented, in many cases it did demonstrate the erroneous nature of hypotheses we had established previously and accepted as unquestionable.
Figure 10 shows a case in which behaviour
problems rose sharply on Mondays (41%), and as the week progressed
they tapered off considerably (2% on Saturdays). As a rule, this
SAAP spent Sundays with his famiiy, a circumstance which
led to the conclusion that some of the therapy guidefines needed
modification. For that reason, we scheduled an interview with
the family members (which we do anyway on a regular basis) in
order to discuss this particular matter. From that day forward,
after we had advised the family on new treatment guidelines, the
problem disappeared almost entirely. Nevertheless, as is evident
in Figure 11, the vast majority af the behaviours (93%) had no
apparent cause.
Case C. Distribution of behavior
problems according to the apparent reason.
Figure 11
Epileptic seizures
It has been recognized that a substantial number of SAAP have epilepsy as an associated pathology, especially from adolescence on.
The record is used to note all of the seizures suffered by the SAAP (day, time, type, duration, the administration of a drug whenever necessary in order to alleviate the seizure, etc.).
This record provides an exhaustive
list of the epileptogenic manifestations of the SAAP, which greatly
facilitates the proper administration af anticonvulsant drugs.
GLOSSARY
In order to standardize the recording
criteria, we created a glossary defining all the items in the
different records and the criteria to apply in noting them. The
glossary serves as a foundation for training professionals in
the use of these tools.
EVALUATION
The programs we developed are merely simple but rigorous tools to facilitate the tracking of all the SAAP cared for in La Garriga.
Aside from the importance of the records in the software program, I must also stress the crucial need for close coordination between the administrative teams of our network of services in obtaining an overall picture af the SAAP. To ensure this, the directors of the day centres and the residences hold daily meetings.
Furthermore, a multi-disciplinary team, consisting of those in charge of the day centres, the residences, the computer program, educationalists, psychologists and the psychiatric consultants of La Garriga, meets on a weekly basis to conduct an in-depth analysis of the data in the records. In this respect, the software program is an additional tool at the service of this multi-disciplinary team.
Regarding the educators, that is, the professionals who care for the SAAP directly, the information obtained from the records is also highly useful in shaping their daily interaction with the disturbed individuals in their charge.
The educators have access to objective
data on the progress of the SAAP and can apply the required changes
in the therapy programs rapidly and effectively.
CONCLUSIONS
As for a general assessment of the data processing system used in the La Garriga Network of Services, we have come to the following conclusions since its introduction: