5th Congress Autism-Europe
Articulos / Proceeding
Autism-Spain

"20 Years of residential treatment for high functioning autistic adolescents"

Mrs. Drs. F.H.Th.M. Aerts,
Dr. Leo Kannerhuis, the Netherlands

1. INTRODUCTION

The Dr. Leo Kannerhuis in Oosterbeek, the Netherlands was founded in 1974 as the first specialized clinic in treating autistic people in the Netherlands. In the same period a few centres for ambulant assessment of and help for autism were also established. For a long time, however, professional services in all parts of the country were limited. Particularly for adult autistic persons there existed no adequate housing and working facilities. Many of these people were inappropriately placed in institutions for mentally handicapped or in general psychiatric hospitals.

The Dr. Leo Kannerhuis has as its target-group high functioning autistic adolescents between the ages of 14 - 21 years. This is a notoriously difficult phase for autistic youngsters for several reasons: the school facilities come to an end, the autistic youngsters lose contact with their peers and they are unable to further their development independently. They have no real social perspective. Mood and behaviour disregulations may also arise in this phase.

Treatment in the dr. Leo Kannerhuis has a dual purpose:

1 . Learning effective skills and stimulating more independent adaptation to social reality;

2. Treatment of behaviour disorders and dysfunctional adaptation patterns.

Most of the youngsters admitted to the dr. Leo Kannerhuis during the last twenty years

were very retarded in their social skills development and had serious behaviour problems

as well. Some of them had already been hospitalised in psychiatric clinics for children. When admitting a youngster, the dr. Leo Kannerhuis makes no great demands regarding the level of intellectual functioning. The criterium is that at least the visual-perceptual test-scores are above IQ = 85 and the verbal scores above IQ = 70. A verbal IQ between 55 and 70 is acceptable under certain conditions acceptable. This means that in our residential group there is a considerable variation in intellectual level.

Method of treatment in the dr. Leo Kannerhuis: Youngsters live in small groups (6 individuals) formed on the basis of the level of social functioning. In the group there is a climate of acceptation of the autistic handicap. Social stimuli and demands are structurally offered at a comprehensible level. There is a program to train self-help and daily skills, and communicative and social skills, and there is also job-training and freetime activities. After an internal program advanced youngsters get the opportunity to learn to function in external real social situations, such as public transport, shopping, banking and working. During the residential treatment there is usually intensive contact and working cooperation with the youngsters' parents and family.

Some data:

The present capacity of the dr. Leo Kannerhuis is 42 places, divided over 7 groups. The average clinical time of residence is about 4 years.

For practical reasons the time of residence is partly determined by the possibilities of finding an adequate adult living-facility.

Survey of 125 outplacements over 20 years:

- back to own family 21 (17%);

- independent living with professional help and supervision 14 (11%);

- group of high functioning autistic persons 11 (9%);

- group of mildly mentally handicapped 30 (25,5%);

- group of moderate mentally handicapped 9 (7%);

- workhome for seriously handicapped autistic persons 26 (21 %);

- general psychiatric hospital 7 (5,5%);

- other 5 (4%).

Changes in the course of 20 years since the foundation of the dr. Leo Kannerhuis.

In the Netherlands the professional services for autistic people have increased and are still increasing. On the one hand living facilities for autistic people have been established. These are differentiated according to the degree of the autistic handicap and the level of social functioning. Because of this development the possibilities of outplacement of the clinic have increased and the duration of clinical stay can be shortened. Placement in a psychiatric hospital, which occurred out of necessity, is no longer needed.

Return to the parents' home has become much less frequent or occurs merely as an in-between stage. On the other hand the possibilities of ambulant help have increased. The regional centres have been reinforced and in a number of places training-programs for autistic adolescents have been set up. Consequently more autistic youngsters with a relatively mild handicap can find their way in their own region and no longer need clinical treatment. Still missing are day-centres where adolescents with more serious problems can be treated while staying at home. The dr. Leo Kannerhuis recently planned to set up a day-treatment centre for its own region. This centre can work together with the clinic and take over some tasks.

During the last few years, however, we have seen not a decrease but rather a strong

increase of referrals. The reasons for this could be:

1. Institutes for health services have become more familiar with autistic disorders and can detect them earlier.

2. The extension of autistic disorders with pervasive developmental disorders or atypical autistic disorders.

From the beginning the dr. Leo Kannerhuis has admitted not only the classic Kanner-type (aloof, passive) autistic, but also the Asperger-type adolescents. Now however we are confronted with young persons with very a-typical and complex psychiatric problems. For this reason we have been obliged to clarify our admission criteria. Our point of view is that the autistic disorder should be dominant in the problem complex, i.e. a primary serious handicap in social intelligence and competence. Furthermore, the treatment is mainly directed at improving of handicap.

II. 20 YEARS OF SKILL TRAINING IN THE DR. LEO KANNERHUIS

An important part of the treatment is skill training.

Regular education

In the first years the youngsters followed part-time-programmes at different schools in the neighbourhood as: IVO-MAVO (secondary school for lower general education), ITS (Technical School), LOM-MAVO (special school for children with educational and pedagogical problems), Lagere Tuinbouwschool (Agricultural School).

In general our experiences were disappointing which has led to the following conclusions:

* A relatively high social competence is a prerequisite for attending a school.

* Both the teachers and the other students at the school should be tolerant of the autistic students.

* Schools do not prepare the autistic youngsters for a simple job on the labour market.

* External school attendance must not have a therapeutical intention; their teachers will be overcharged.

* Only part-time external school attendance is in accordance with our treatment.

THE TRAINING PROGRAMME

Training domains at the dr. Leo Kannerhuis:

1. Job Training

2. Social Skills Training

3. Self-help Training

4. Leisure Time Training

1. Jobtraining

We became conscious of the need to prepare the youngsters for a limited number of jobs only. In this period the job training was gradually extended with:

- working with wooden and metal materials

- working in a garden and greenhouse

- manual skills and working with textiles

- administrative activities

- restaurant, catering and domestic activities.

Job training consists of 4 stages:

1. Education and job-specific skill training

2. General job skill training and social skill training

3. Starting with a real job, facilitated by job coaching in a sheltered workshop

4. Becoming a 'worker' in attitude, identity and future perspective.

Training took an average of 1.000 hours in three years. This job training programme was quite successful. Job training prepares the youngsters for a sheltered workshop.

In the future more than one half of the youngsters will de dependent on the organisation of day-care-centres for the mentally handicapped for their daily activities. The job training programme for this subgroup is slightly different: more relaxed, stereotype interests are used to motivate skill training and technical skill training starts at a lower level with a developmentally-oriented designed programme.

This programme proved suitable for autists with a mental handicap and persons with Asperger syndrome.

2. Social Skill Training

Programmes we used are:

  1. Human Development Programme Activity Guide for Pre-school and Kindergarten, by H. Bessell.
  2. Interpersonal problem-solving skills by Spivack, Shure.
  3. Social skill training by Goldstein
  4. Rational emotive therapy.
  5. Formal weekly group-meetings with one of the autistic patients as chairman etc.

Our experiences:

3. Self-help Training

Our experiences:

4. Leisure Time Training

This training consists of: new skills, clubs in the community, parties, outings, holidays

Our experiences:

Conclusions of 20 years of skill training

Be careful not to overestimate the capacity to integrate experiences and the amount of skill training. Select only basic skills. Although some skills do not integrate properly, they can serve as useful protheses.

III RESEARCH IN THE DR. LEO KANNERHUIS

There have been several research projects in the dr. Leo Kannerhuis during the past 20 years.

  1. Face Processing Strategies in Autistic Individuals (Teunisse)
  2. Predictors of Progress in Social Understanding / Successful Treatment (Berger)
  3. Progress in Social Skills, Self help etc. (Janssens, Huskens, Aerts)

1. Face Processing Strategies in Autistic Individuals

Teunisse did series of face processing strategy experiments with our autistic youngsters. He presented the results yesterday at this congress.

2. Predictors of Progress in Social Understanding / Successful Treatment

The Kanner autistic person has a characteristic intelligence profile: the verbal and social

IQ's are low and there is a high to excellent visual perceptual IQ.

In the first research project (Berger 1983) we tried to determine whether our treatment caused a shifting, an improvement, in IQ after some years. We were not so much interested in the visual perceptual IQ, but mostly in the verbal and social IQ's. Berger tested 25 patients who were treated in our hospital and an control group of 12 youngsters on the waiting list for our clinic. The IQ's were measured after a minimal of 2 years of clinical treatment.

Results:

The visual perceptual IQ does not change in any way. This is the case in both groups. The verbal IQ does not change either in the treatment group nor in the control group. The social IQ improved in 15 of the 25 persons (60%). In the control group there was no change.

Berger found some other data:

The improvement of the social IQ is independent of:

An improvement in social intelligence does not mean that the autistic person improves his social competence. The level of social understanding does not imply the same level of social competence. In another study Berger found that cognitive shifting and progress in social understanding are positive related. The relation between cognitive shifting and progress in social competence is a subject for further study. The relation between social understanding and social competence is another part of our research projects.

3. Results of Treatment in Skill training, Self-help training etc.

In 1982 Janssen did a validation study in our institute. In 25 autistic adolescents there was a significant correlation between improvement in social intelligence and progress in social competence compared with a control group of 20 persons studied over 5 years. Measured by the Dolderse Schaal, the Wing's Childrens' Handicaps, Behavior and Skills Schedule.

Results:

The adolescents who received trainings in our institute have more social skills and less infantile behaviour. However there was no improvement in the factors of "has some care for other persons" or "the sensoric and motoric disabilities". The treatment makes the adolescent more willing to make contact with other persons.

Another study (Huskens) was performed in 1994. In a group of 12 adolescents Huskens compared the behaviour and competence of 12 adolescents before and after the start of the treatment. There was no significant improvement in social competence. On the level of maladaptive behaviour, measured by the CBCL and the Vineland Maladaptive Behavior Scale, there was a significant decrease of this behavior.

During last 2 years we did a pilot study in which we annually measured the skills in the domains of

measured by SRZ-P, Vineland, CBCL. (sheets)


IV DISCUSSION

How can the results of the treatment be measured? What are the most important domains to investigate social intelligence, social competence, working abilities, etc.? What are the best instruments for measuring the developments for this high functioning group of autistic adolescents?

We discovered that the scoring of the Vineland gave us some problems because our autistic adolescents have some deficits in their abilities. The Vineland is a developmental scale, so you cannot measure the items which fall out. Our adolescents usually score too high.

Plans for further investigations:

We are planning a study to investigate which cognitive strategies are important for an autistic person to profit from our treatment (Berger).

We will develop our training programmes in modules so that we can measure the steps the youngsters learn. There will be an evaluation of every training module; this is already the case in our biking and banking programmes, but it will also de added to communication or TOM training. We planned to do this at the beginning of the treatment, as out-patient, in the day-care or at the residential treatment. We will measure the level the adolescent has at that moment so he can start the training at that level.

Mrs. Drs. F.H.Th.M. Aerts,

Child- and adolescent psychiatrist Dr. Leo Kannerhuis
Behandelingstehuis voor autistische jongeren
Jhr. Nedermeijer van Rosenthalweg 16
6862 ZV Oosterbeek
Telefoon 026 - 333 30 37