Asperger Syndrome (Autistic Spectrum Disorder) and
the Self-Reports of Comprehensive School Students.

 

Michael Connor

 

Relatively little information exists concerning the experiences of young people with ASD (Asperger Syndrome) elicited while at secondary school level. Accordingly, a sample of students diagnosed with Asperger Syndrome was interviewed about day to day school issues; and the experience of the SEN Co-ordinators was tapped. While marked individual difference may exist among young people all legitimately diagnosed, there were consistently expressed concerns about peer interactions or the use of break and lunchtimes; and it was concluded that, even among students in mainstream schools whose autistic disorders are towards the mild end of the spectrum, the potential or actual difficulties should never be underestimated.

Introduction

Over recent years, there has been an observable increase in the number of children diagnosed with Autistic Spectrum Disorder. This may be explained partially in terms of greater awareness of the signs and symptoms of Autism and Asperger Syndrome, but there is a view (see, for example, Gillberg 1993) that there has been a real increase in the incidence of ASD.

Accordingly, children with these difficulties will be all the more likely to be part of a mainstream school population, especially given the momentum for inclusion of children with special educational needs; and there is a burgeoning literature on the subject of (educational) management of pupils with ASD including the present writer's own contribution (Connor 1999).

Cohen (1998) describes individuals with autism as "a highly studied population" who have been observed, tested and treated in a multitude of ways, but knowledge of autism is still incomplete. She refers to the attempts to tap the individuals' own experiences of being autistic, while aclmowledging the apparent irreconcilability of gaining meaningful responses from individuals whose very difficulty involves communication, or insight into the viewpoint of other people.

Nevertheless, Cohen quotes from autobiographical accounts of "high functioning" or "recovered" adults, and highlights the common references to anxiety about an unpredictable world and a desire for stability, and anger towards those who may seek to interrupt the reassuring routines and rituals established.

The common factor about these self-report studies (such as the recently published experiences of Liane Willey 1999) is that they have been written by adults who look back to their experiences as children or young people. There seems to be little information about the views and reported experiences of young people elicited while still attending school.

There is a great deal of material describing Autistic Spectrum Disorder, characterised by the "triad" (Wing 1988) of impairments in social recognition, social communication, and social understanding and imagination, which may be expressed in various ways or at different levels of severity.

Meanwhile, debate continues whether high functioning autism and Asperger Syndrome can be clearly differentiated. What matters is that individuals with Asperger Syndrome may have apparently adequate expressive language, cognitive scores which fall into the average range, and adequate educational achievements.

Accordingly, diagnosis may be delayed, and the very special needs of the children or young people concerned may remain either unrecognised, or inappropriately interpreted perhaps as a form of emotional or behavioural disorder to be treated through anger management or some approach designed to modify "in-child" characteristic) when one is not going to make these children ordinary.

This is all the more critical in the light of the relative invisibility of the condition; and of the risk that, being part of a mainstream setting, there will be witting or unwitting assumptions that the students will be able fully to integrate within normal scholastic and organisational routines.

In this context, Howlin (1998) provides a reminder that the common approach by which "disruptive" incidents are examined in terms of antecedents, actual behaviours and consequences, is of limited usefulness among children with ASD. One may not be able to appreciate how they themselves perceive or interpret antecedents or consequences. Instead, the behaviour may be reflective of some anxiety, and demonstrates a need to escape from some situation causing stress, or to gain stimulation/attention, which cannot readily be expressed in words.

The important thing, as set out by Barber (1996), is the child's social skill and confidence, and awareness among all teaching staff of the particular style, and profile of strengths and needs, of a student with ASD.

These points about individual style, and potential stress, are underlined by the study of Tonge et al (1999) which showed the marked proneness of children and young people with Asperger Syndrome to behavioural and emotional disturbance. That the Asperger group may show a higher level of overall problems than a sample of individuals with high functioning autism may prove a differentiating factor between the two.

In any event, the likely disorders among the Asperger sample studied involved anxiety and disruptive behaviour, and marked difficulty with social interaction. The implication held that problems with non-verbal learning capacities, or with information processing, as well as weakhess in reading social situations, may lead to task avoidance tactics and anxiety, especially if these characteristics are not readily observable in children and young people whose difficulties are (supposedly) at the mild end of the spectrum.

Simpson and Myles (1998) also highlight the point that individuals with Asperger syndrome may present as entirely ordinary to an external observer, despite the presence of marked social and communicative disabilities. They recognise a tendency for some interventions to be directed towards a change in the person rather than towards modifying "environmental" circumstances or demands.

For example, Asperger syndrome does not have direct implications for aggressive behaviour, but such behaviour may be a secondary issue arising from frustration, or from negative interactions with other young people who themselves have been irritated by the apparently provocative or self-centred style of the individual with Asperger syndrome. To focus upon the behaviour per se may only perpetuate the problems, or set the individual the more apart.

These issues become all the more significant in the light of the comment from Rutter (1999) that research does not commonly focus upon ongoing psychological or social "events", or from Jordan et al (1995) that researchers may frequently fail to express findings in terms of advice for day to day management (and those who work directly with autistic children and young people usually lack the means or opportunity to keep up with research publications!)

Meanwhile, it has been suggested by Burden and Homby (1989) that a common weallness in the evaluation of school projects or provisions is that of failing to sample the views of the people most directly concerned, i.e. the pupils themselves. Evaluation (for example, of inclusive practices) requires a multiple input given that different views may be gained according to the role of the person providing information.... teacher, headteacher, parent, administrator, support professional or pupil.

Therefore, this present study was initiated in order to gain some insight into the opinions and experiences of a sample of young people diagnosed with Asperger syndrome and attending their local comprehensive schools, along with a sampling of the opinions and experiences of the Special Needs' Co-ordinators in those schools. The aim was to identify any common themes linked to anxiety or stress in the young people, and highlight the particular areas, identified by the Co-ordinators, as presenting management challenges.

Subjects

A total of 16 students was identified, from the Special Needs' records, or via discussion with SEN Co-ordinators, who had been formally diagnosed with Asperger syndrome. These students covered the comprehensive school age range, and included 5 from year 7, 7 from year 8, 2 from year 9 and 2 from year 11. There were 15 boys and 1 girl. Nine comprehensive schools were represented (and the views of the 9 coordinators were gained).

Method

Each student was interviewed individually in the school setting, using a pre-prepared and simple schedule (copy attached as an appendix). The responses were recorded verbatim, and subsequently collated and themes identified. Discussions with the Coordinators were also held in the school setting, and commonly-expressed themes were highlighted.

Outcomes (Student Responses)

· Which subjects or activities do you like doing at school?

 

Number of References

Craft, Design and Technology

7

Science

7

PE (and Sport)

6

Maths

5

Art

5

ICT (Computer studies)

4

Drama

4

Writing and Reading Stories

3

History

2

English

2

Geography

1

In addition, two students referred to being able to meet friends; and one student expressed a preference for having a series of short tasks rather than longer term assignments

Meanwhile, in respect of Science, the additional comments referred to "learning lots of facts about how life works" and to "an interesting subject where you can learn how to do things". CDT was preferred by one student because there is a choice of activities and lots of help; and by another because "it is constructive and you can see results".

There is an overall apparent preference for practical and factual subjects; and activities which involved any length of reading and writing appeared generally unpopular.

The relative popularity of PE/Sport was interesting given the prediction that little purpose would be attributed to this subject, and that, therefore, it would not be among preferred subjects.

Drama may be popular because of the relative emphasis on r6le play and, therefore, on rehearsing for certain situations.

· What subjects or activities are you good at?

 

Number of References

Maths

8

Art

6

ICT (Computer work)

5

PB/Sport

4

Science

4

CDT

4

English

3

Drama

2

History

2

French

2

Writing Stories

1

Reading

1

Music

1

Again, the practical or factual subjects predominate, or those which do not involve much interaction or discussion, or writing at length.

One student explained his liking for computers in terms of its never getting cross; and another described his ability in Maths as resulting from a facility for learning things off by heart.

· What is the worst thing about school? What do you really dislike?

 

Number of References

Music
(2 responses referred to "not getting on with the teacher" and 2 to seeing no point in the subject).

4

Maths
3 students referred to never having understood the subject, especially Algebra*; and 1 to having a change of teacher)
[*Whose purpose may not always be clear?]

4

English
"The teacher is stupid"; "There is too much writing"

3

PE
("I'm no good at it"; "There's no point"; "The teacher makes you do things which I can't do")

3

Art
("It's boring"; "I get frustrated when I have to do things again")

2

Science

1

Geography

1

Homework
("It builds up on you")

1

Meanwhile, although the question was within the set concerned with subjects or activities, three students specifically introduced the matter of "social" problems, viz. "Walking from lesson to lesson when the other pupils get on to me"; "Other pupils upset me, they say things behind my back"; "People being not nice to me and calling me not normal".

· What sort of things do you find hard? What are you not good at?

 

Number of References

PE

4

Maths

3

Music
("I can't use my hands to play an instrument")

2

Science
("I don't always understand it")

2

Art

2

Spelling

1

Project work

1

Listening

1

Carrying out instructions

1

Organising myself

1

Writing at length

1

Organising writing into paragraphs
"Most things are hard because I don't understand things at first"

1

 

Again, there were references to social issues. Two students referred to difficulty in making friends, and one of them went on to say, "Maybe it's because I don't act the same as others".

· What do you do if you have a problem at school?

 

Number of References

Talk to a teacher

10

If it was about other pupils, try to ignore it

3

If it was about other pupils, tell my parents

3

Depends: either tell the teacher or keep quiet

2

Just walk away

2

Tell the Special Needs Co-ordinator

2

One student added that he would talk to a teacher "if I have to: I'm a bit shy which is why I like to work on the computer which has no emotions".

It appears that, although examples of "problems" to illustrate the question included references to work, losing things, understanding topics, other pupils and homework, it was apparent that many or most responses implied social relationship problems; and 3 responses made the connection quite explicit, viz. "Ask them why they are doing it"; "If they carried on, I'd lose my rag"; "I sometimes hit people, I can't control myself".

· How do you get on out of class - during break or lunchtime?

One response was wholly positive - "it's fun; I play sports".

Some responses were "cautious", with three students referring to break/lunchtime as "OK, if I talk to some friends", and one to these times being "all right now but people used to take the mickey and I got upset".

The other 11 responses were as follows:

"I just got ready for the next lesson, or I do my homework, or go and say Hello to the teacher."

"It's usually OK - I go to the special needs' building and do my homework at break and lunchtime."

"I prefer to stay inside and go to a club."

"I go to the library."

"I spend the time in the homework club."

"I find the lunchtimes hard."

"I don't really play with anyone or play games or anything: when I'm doing nothing, lunchtime seems a long time."

"It's worse than in class because in class you are busy - I try to stay away from other people."

"I spend most time in the music room, or I keep occupied and away from the playground as far as possible."

"I don't do much; I stand around or go to the library."

"I find it very hard to play because nobody likes me, so I just walk around or do my homework in the learning support room."

· Do you have any particular friends at school? Why do you like them?

 

Number of References

 

"A few"

5

In all cases, these pupils had been known for a long time, since junior school early days.

No

4

1 response: "I did have, but he went to another school."

2

4

The responses largely referred to these other pupils as kind or patient, not annoying.

1

1

"Shared interests"

2 girls

1

"They are patient with me."

The last response was as follows: "It's easier to have a teacher as a friend, rather than a pupil".

· Is there anyone that you do not get on well with? Why is that?

Apart from the five pupils who simply replied "No", it would be helpful to quote the answers in full rather than seeking to categorise them:-

"1 person..... other people pick on me and try to get me to fight others. There was a fight going on and I went over and told this boy to stop."

"Yes, I'm different from normal kinds of people because I don't swear. They think I'm not cool."

"There was, but not now. He used to take my things."

"Two girls; one hits me when I don't say hello, the other hits me every time I say hello."

"Nobody in particular. If people are nasty, I just ignore it."

"One boy always talks about me: he's always whispering."

"A few: They distract me and are rude to the teacher."

"Some boys pick on me: one boy finds it fun to tease me."

"Hundreds of people. I don't know why; I don't know what happens."

"X - he finds it fun to beat up Year 7s"

"There's one teacher I really dislike because she threatened detention if I didn't do the work in time."

· What helps you to learn best (what sort of group or lesson)?

 

Number of References

 

No preference

4

 

Small group

6

"When we have a choice of activity"
"It's quieter"
"The noisier or larger the group, the more difficult it is; and I worry when the teacher gets angry"

Working on my own

4

"With a computer: it doesn't forget things and I can get what I need"
"I like working on my own in a big class where you can be spaced out"

With one or two others

2

"I don't like talking in front of a whole group;"
"They can tell me things when I don't understand"

· What needs to change....
 

About yourself?

About the school?

 

Number of References

 

Number of References

Nothing

7

Nothing

5

Calm down; not lose temper

4

Longer breaks

1

Listen more

2

Shorter week

1

Try harder

2

Pupils' attitudes to others

1

"Make me less inventive in CDT because my ideas are too much for the skills I have got"

1

Explain things more

1

Put a suggestion box in the hall

1

Covered way between buildings

1

   

Warmer changing rooms

1

   

Replace teachers with computers

1

   

Reduce the bad/noisy behaviour

1

   

Increase discipline

1

   

Recognise how difficult it may be for people of other religions

1

   
 

Number of References

To work with computers (or design computer games)

8

Become a designer

4 (Aircraft
Military vehicles
Gardens
"To make life easier")

Go to College

3

Become a sportsman (footballer)

2

Actor

1

Join the Army

1

"Get a job to pay for my martial art hobby"

1

Zoo Keeper

1

Teacher

1

The (few) other comments were as follows:-

It was the one girl in the sample who said that she wanted to be a teacher, and went on to say, "I like people who have special needs and working with them. I feel safe there".

"Learning in school is a waste of time because the classes can be noisy and misbehave and it puts me off. I can't work when things are going on."

"I'm into computers a lot; I really am. I enjoy getting on with my work on my own." "If people were nice to me, I'd be a lot happier."

Issues Perceived as Significant by the Special Needs' Co-ordinator

The following were described by the Co-ordinators as ongoing concerns, and are listed in order of the frequency of reference:

It is further noted that the needs, or their expression, may change over time.

 

Discussion

One immediate implication from the responses of the young people themselves and their teachers is the need to recognise that social and other problems may be quite marked, even at the mild end of the autistic spectrum; and one is reminded of the role of emotional sequelae from the possible mismatch between scholastic or social or behavioural demands in the mainstream setting and the particular style or needs of the individuals.

Staff awareness of the nature of ASD and Asperger syndrome, and a whole school approach, are critical in order to minimise the risk of unreasonable expectations. For example, the weaknesses relating to a lack of "Central Coherence" (such as a problem in using context, or difficulty in seeing the overall nature of a task, etc.) or a lack of incidental learning and generalisation, which may commonly be observed at varying levels of severity, would suggest some modification to curriculum delivery. There needs to be consistency among all staff in the use of direct and unambiguous directions, in taking nothing for granted, or in recognising potential problems with shifling attention and in moving from one phase or activity of a lesson to another.

Further, tactful awareness raising of the nature of ASD among peers may reduce some of the social pressures and enhance the probability of acceptance into peer groups. A mentoring scheme involving older students may be helpful, especially with regard to the lunchtimes.

It may not be appropriate for staff to be seen to be intervening directly, but the use of a "buddy" system plus the continuing availability of lunchtime clubs may minimise difficulties for the young people in question during these unstructured times.

Some direct work might be undertaken by school staff and/or support staff either with an individual student or with the student within a group. Individual work could involve role play, and rehearsal of some situation causing concern, the use of social stories or solution focused therapy. Small group work could include the use of the strategies within "Circles of Friends" and social skill training. In any event, it may be possible via observation or direct discussion, to highlight what and where are potential problems such that efforts could be made directly to teach certain behaviours (and to focus attention upon the viewpoints of other people), or to avert the problems (providing a bolt hole, or allowing the student to by-pass the lunch queue, or whatever). One school referred to the problems linked to sharing a text book, and ensured that the given student always had access to his own copy!

The concept of some "bolt hole" is important in its own right in providing a clear destination for the student(s) at the start of the day, or during breaks, and a setting to keep possessions and generally to organise him or herself between parts of the school day.

Regular communication with parents is desirable, such that the individuality of the student in question is recognised, and that both staff and parents are aware of the nature of seemingly minor events which may have a disproportionate impact upon the student's level of confidence. Further, it may be appropriate jointly to discuss whether certain elements of the curriculum might be modified or reduced. PE/Games might be a case in point if the student has particular difficulties as a result of motor or co-ordinatory weakness. Meanwhile, the popularity of computer-based working could be exploited (even if the popularity is a matter of difficulty in coping with the greater subtlety in interacting with a teacher).

In sum, it is clearly appropriate never to underestimate the actual or potential difficulties linked to ASD and Asperger syndrome, and the stress to which the individuals affected may be subject, irrespective of the care and support from the staff. It would be reasonable consistently to seek the views of those young people and provide an opportunity for the expression of anxieties, especially if needs, and circumstances, and demands change over time, and if these anxieties are expressed through behaviour which could be misinterpreted as aggressive or disruptive.

As with any special needs, the principle of inclusion is desirable and to be implemented whenever possible; however, 'inclusion' must involve more than simply attending a mainstream school, and may involve considerable shifis in organisation or expectations in order to accommodate the observed needs.

References

 

Barber C (1996) The integration of a very able pupil with Asperger Syndrome into a mainstream school. British Journal of Special Education 23. 19-24

Burden R. and Homby J. (1989) Assessing classroom ethos. Educational Psychology in Practice 5(1) 17-22.

Cohen 5 (1998). Targeting Autism Los Angeles: University of California Press

Connor M (1999). Children on the autistic spectrum: guidelines for mainstream

practice. Support for Learning 14(2) 80-86.

Gillberg C (1998). Prevalence: Paper presented to the National Autistic Society Conference "Autism: Theory into Action". London 20-21 November

Howlin P (1998). Practitioner review: psychological and educational treatment of autism. Journal of Child Psychology and Psychiatry 39.307-322.

Jordan R., Libby S., and Powell S. (1995). Theories of Autism: why do they maffer? School Psychology International 16 271-302.

Rutter M. (1999). The Emanuel Miller Lecture: Autism - two way interplay between research and clinical work. Journal of Child Psychology and Psychiatry 40(2)169-188.

Simpson R. and Myles. B. (1998). Aggression among children and youth who have Asperger syndrome. Preventing School Failure 42(4)149-153.

Tonge B., Brereton A., Gray K., and Emfield 5. (1999). Behavioural disturbance in high functioning autism and Asperger syndrome. Autism 3(2) 117-130.

Willey L. (1999). Pretending to be Normal. London Jessica Kingsley Pubhshers

Wing L. (1988). The continuum of autistic characteristics. In Schopler E. And Mesibov G. (Eds.) Diagnosis and Assessment in Autism. New York: Plenum Press.

Appendix

Asperger Syndrome : Self Report Schedule

 

 

What do you like doing best at school (which subjects or activities)?

 

 

 

 

 

What sort of things are you good at?

 

 

 

 

 

What is the worst thing about school? What do you really dislike? Why?

 

 

 

 

 

What sort of things do you find hard? What are you not good at?

 

 

 

 

 

What do you do when you have a Droblem in school?

 

 

 

 

 

How are you getting on out of class - during break or lunchtime?

 

 

 

 

 

Do you have any particular friends at school? Why do you like them?

 

 

 

 

 

 

Is there anyone that you do not get on with? Why is that?

 

 

 

 

 

 

What helps you to learn best - what sort of group or what type of lesson?

 

 

 

 

 

 

Wht do you think needs to change:

About yourself? About the school?

 

 

 

 

 

 

What do you want to do when you leave school?

 

 

 

 

 

 

Any other comment?

 

 

 

 

 

 

 

This article is reproduced by kind permission of the author.

© Mike Connor 1999.

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