Adventist International Institute

of Advanced Studies

ASPERGER SYNDROME AND INCLUSION: WHEN EVERYTHING CHANGES BUT THE SCHOOL

REMAINS THE SAME

A research paper

presented in partial fulfillment

of the requirements for the course

EDCI 632 INCLUSIVE INSTRUCTION

by

Edgar Beskow

December 2017

TABLE OF CONTENTS

INTRODUCTION ………………………………………............................................ 1

LITERATURE REVIEW ……………………………………………………………. 2 Diagnosis and Symptoms ……………………………………………………….. 2 Schooling of Children and Teenagers with Asperger .………………………....... 4 Summary ………………………………………………………………………… 6

METHODOLOGY …………………………………………………………………... 6 Instruments ……………………………………………………………………….. 6 Data Analysis ……………………………………………………………………... 8 Ethical Issues ……………………………………………………………………... 8

RESULTS ……………………………………………………………………………. 9 An Inclusive Institution …………………...……………………………………... 9 Too Many Changes ………………...…………………………………………….. 10 A Needed Change ……..…………………………………………………………. 11

CONCLUSION ……………………………………………………………………… 12

REFERENCES ………………………………………………………………………. 13

APPENDIX ………………………………………………………………………….. 15

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INTRODUCTION

Nowadays, the diagnosis of Asperger is made frequently at younger ages (Chiang, Tsai,

Cheung, Brown, & Li, 2014; Peters & Brooks, 2016). This is due to a clearer differential

diagnosis system since 2011 (Mouridsen, Rich, & Isager, 2013). One of the conditions that the

DSM IV establishes as necessary to the diagnosis, is that these people need to live in structured

and routinely environments (Pittman, 2007). Thus, the presence of simultaneous changes can be

a stressful experience for children and teenagers with Asperger.

This case study tries to understand the experiences and challenges of learning and

schooling of Rony (not his real name), a teenager who has been diagnosed with Asperger

Syndrome. Rony is 14 years old and is studying in grade 8th. Since kindergarten, he has attended

general education in the same school with some curricular adaptations. But last year, the family

moved to another country creating changes in culture, language, school, friends, and academic

level. Considering this context, Rony and his parents are the boundaries of this case study in

order to address two research questions: (a) what are the challenges of schooling for a teenager

diagnosed with Asperger? and (b) what are the advantages and disadvantages of changing from a

school without an inclusive program to another school specialized in inclusion, for a teenager

diagnosed with Asperger?

Therefore, through interviews with Rony and his parents the current research has the aim

of identifying the experiences and challenges of learning and schooling of a teenager diagnosed

with Asperger who is transferred from general education to a school adapted for better inclusion.

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LITERATURE REVIEW

Autism was identified in the 1940s, when infant psychiatry was just beginning. Originally

it was not differentiated from other mental conditions as schizophrenia or mental retardation but

the research work of two German psychiatrists allows us today to better understand this disorder

usually diagnosed in childhood (Feinstein, 2010). Still today, people are discussing who was the

first to discover autism. There are those who say that it was Leo Kanner and others say that it

was Hans Asperger. The striking thing is that both suffered persecution by the Nazi government

because they protected and valued children with mental disorders. Asperger said that children

with mental problems are as important as others and for that, society owes them special

recognition (Boucher, 2009). This infuriated the policies of intolerance that surrounded the time

and geography of these researchers. A particular empathy for children with Autism was actually

very strong in both researchers since Hans Asperger actually had Asperger's symptoms, and

Kanner's father had many of the symptoms of autism (Feinstein, 2010).

Diagnosis and Symptoms

Despite the contribution of these two psychiatrists, autism was officially recognized in

1980 by the Diagnostic and Statistical Manual of Mental Disorders (DSM-III). In the said

manual, autism is described as lack of responsiveness to others, impaired language and

communication skills, and bizarre responses to stimulus of the environment. However, in 1994,

the recognition of a spectrum of conditions within autism begins to be evident and the condition

of children with Asperger is distinguished within the said spectrum. By definition of the DSM IV

(2000) the Asperger disorder is considered as a more functional manifestation, within the autism

spectrum (Plimley, 2007). It is also important to recall that the prevalence of Asperger is also

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significantly higher among males when compared to females (Robinson, York, Rothenberg, &

Bissell, 2015).

The three characteristics described for Autism are present but the children with Asperger

do not have significant cognitive or language delays, which allows them to interact more fluently

and progress academically in school (Boucher, 2009). Another criterion of differential diagnosis

between Autism and Asperger is that people with Asperger usually have an important remission

of symptoms in adulthood. Which makes them much more functional and capable of developing

social skills (Helles, Gillberg, & Billstedt, 2015). Due to the better prognosis and functionality of

the Asperger, many authors denominate the Asperger like High-Functioning Autism (Chiang,

Tsai, Cheung, Brown, & Li, 2014; Peters & Brooks, 2016).

The cause of Asperger is clearly associated with neurological factors and there is

evidence of a higher prevalence of this diagnosis within a family with antecedents (Baron-

Cohen, 2004). Being a condition of neurological origin, it is usually present along with other

pathologies such as epilepsy and sensory and motor difficulties that can only be explained by

neurological causes (Mouridsen, Rich, & Isager, 2013). As a result, people with Asperger usually

show repetitive and stereotyped patterns of behaviors and interests (Chiang, et al., 2014),

difficulty for social interaction (Badone, Nicholas, Roberts, & Kien, 2016), particular personal

preoccupations (Cohler & Weiner, 2011), and coordination and motor skills are generally

affected (Hagberg, Billstedt, Nydén, & Gillberg, 2015). The difficulties in social skills

manifested by people with Asperger can be associated with the deficits that these people have in

what is known as the theory of mind, or ability to decode what people who are in their range of

interaction are feeling or thinking (Doi et al., 2013; Rueda, Fernández, & Schonert, 2014).

Unable to read the social clues, these people find it difficult to develop empathy with those

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around them. However, people with Asperger usually have talents that stand out above the

average especially in their ability to concentrate on a single task, and a privileged and vivid

memory of events that took place long ago (Cohler & Weiner, 2011).

Schooling of Children and Teenagers with Asperger

In learning environments there are some particular dispositions of students with Asperger

that may require particular adjustments. Students with Asperger have high sensitivity to

environmental stimuli, which generates rapid saturation and emotional exhaustion in

environments where there are many people, because it is difficult for them to discriminate

between environmental noises and human voice. A classroom with more than 15 or 20 students

can become a grueling experience for students with Asperger (Boer, 2009). They also have a

limited range of learning interests. Thus, they use to think, recall, and talk about few topics in

which they are able to learn and recall big amounts of information. Mathematics can be complex

for them because they require abstract mental processes. But, their minds are gifted with the

ability to process factual and literal information, for this reason, they usually have difficulty

understanding metaphoric messages. As a consequence of theses characteristics, students with

Asperger feel more comfortable in environments highly structured and with less than 15

classmates. These students perform better when class management is based on repetitive daily

and weekly routines (Pittman, 2007).

Specialists in the schooling of adolescents with Asperger recommend creating a friendly

environment in which sensory stimuli are reduced. Classrooms should have an area or corner,

where these students can take shelter when they are overwhelmed by the environment. Thus,

teachers and classmates should know that these students will walk around during the class, or

will be drawing something, or making repetitive movements, as strategies to keep focus. Each

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transition in learning or school year must be carefully anticipated, rehearsed, and explained to

lessen the frustration that routine changes generate in these students. The resolution of abstract

and mathematical problems must be explained in multiple stages of detailed sub-processes.

Finally, it is recommended to work in close collaboration with special educators since many

students with Asperger also have other associated neurological disorders, which will require

attention and personalized adaptation (Boer, 2009; Brower, 2007; Pittman, 2007).

Changes are generally disturbing for students with Asperger because changes broke

routines and creates in them a sense of helplessness (Pittman, 2007). One of the issues related

with this, is school transitions between primary and secondary education because routines,

physical and time organizations, social environment, and teaching strategies change in this

transition (Peters & Brooks, 2016). What increases more the tension, is that the transfer to the

secondary level occurs along with the entry to puberty, which amplifies confusion. Their

emotions are more affected by hormonal changes, and social interactions become more complex

due to the sexual awakening of their companions. These tensions can generate a setback in their

academic and social progress, generating isolation and even aggressive-defensive reactions due

to the abrupt intrusion of patterns that are unknown to them (Peters & Brooks, 2016). Parents of

children with Asperger usually report that the adolescent period requires special doses of

patience and tolerance. The typical bad mood experienced by children with Asperger due to their

sensory hypersensitivity, is amplified in the adolescence. These states of emotional exasperation

transform them into easy targets for their classmates, generating bullying and social harassment

that they cannot understand but perceive as threatening (Robinson, York, Rothenberg, & Bissell,

2015).

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Summary

From the above described it is possible to synthesize that Asperger syndrome is a highly

functional variant of Autism of generally neurological origin. This syndrome significantly affects

social skills, abstract thinking, motor skills, and generates hypersensitivity to sensory stimuli. At

the same time, students with Asperger can be very gifted in some mental processes, they are

excellent for retaining long-term memory in subjects that are of interest to them, and they can

even excel with IQ above the average. Students with Asperger can perfectly be integrated into

general education environments and to improve their performance and environment, some

adjustments of class management and instructional methods must be made. However, changes

produced by adolescence and changes related to the transfer of primary to secondary school can

be stressors, and even involve setbacks in learning and social skills.

METHODOLOGY

This case study is focused on Rony. His parents will be included as part of the boundaries

established for the research. Therefore, data collection procedures will be conducted through an

interview with both parents and with Rony. These interviews will be recorded, with their

pertinent authorization, and conducted in the mother tong of the family because they are still

learning English.

Instruments

Two semi-structured interview protocols will be utilized. The first one will be a protocol

of nine open ended questions to the interview with the parents. And the second one will be also a

protocol of twelve questions to the interview with Rony.

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Questions for Interview with the Parents

1. How would you describe your son Rony?

2. How was the process from the first signs of Asperger in Rony until the official diagnosis?

3. What were your teaching or training priorities with Rony at home, during his first years

of schooling in your country of origin?

4. What challenges did you face with the schooling of Rony before to come to this country?

5. What are at this moment your teaching or training priorities with Rony at home, since he

is attending a school with a better program on inclusion?

6. What are the advantages of the new school?

7. What are the challenges or difficulties you are facing in the new school?

8. What did you learn as a family thanks the symptoms of Rony?

9. There is something else that you want to tell me?

Questions for the Interview with Rony

1. Please, tell me things that you do well or you enjoy doing.

a. At home

b. With your friends

c. At school

2. What things do you have trouble doing or do you bother doing them?

a. At home

b. With your friends

c. At school

3. What things, from the school of your home country, did you enjoy the most?

4. What things, from the school of your home country, did you dislike or were

uncomfortable for you?

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5. Last year you arrived to this country and you changed the school. So, from that first year

at school: what things did you enjoy the most?

6. What things were uncomfortable for you or you didn’t like?

7. This year you are attending a new school. So, what are the advantages of the new school?

8. What are the challenges or difficulties that are you facing in the new school?

9. What do you fill or what do you think of these changes of school you are experiencing?

10. What do you think that you learned or improve the most in these two last years?

11. What are you trying to improve or do different now?

12. There is something else that you want to tell me?

Data Analysis

Interviews will be transcribed into a written narrative. These texts will be examined using

Holistic Coding in order to identify larger themes (Creswell, 2013; Miles, Huberman, & Saldana,

2014; Saldana, 2013). Such results will be contrasted with the literature review above presented.

Ethical Issues

Each participant, especially Rony, must freely grant their wish to participate in the

research. They will be free not to answer questions that are emotionally painful. Since Rony is a

minor, his parents must sign an informed consent with the details of the procedure. In order to

maintain confidentiality, a pseudonym will be used for each participant instead of their real

names. In order to honor the participants, and as a form of validation of the research, the

transcript analysis results will be delivered to Rony's parents. They will provide feedback useful

to confirm or readjust the conclusions. (Bloomberg, 2012; Creswell, 2013; Farrimond, 2013)

8

RESULTS

Rony's parents experienced great relief in the diagnosis process. "We thought we were bad

parents because we saw some strange things in Rony, but the teachers and the neurologist who

treated him for Epilepsy said that these were normal things of growing" (Parents interview).

Finally, a new teacher who came to the school noticed that Rony acted differently and advised

the parents to consult with a specialist. The day of the interview with the specialist is described

by the parents as revealing. "They chatted for half an hour, with pure laughter, it seemed like

they were playing, but when they were out, the doctor described everything we saw in Rony like

nobody before. It was a relief, someone understood us for the first time" (Parents interview).

From the diagnosis and after a long period of self-learning, the parents describe Rony in very

similar terms to the descriptions made by the specialists. They consider him to be very intelligent

in certain areas, without bad feelings, with distinctive visual memory, and great talent to

remember past events and draw with amazing details. At the same time, they describe Rony's

difficulties as aspects that are present today, but that can be overcome if they persist in a correct

support and therapy. There is no pessimistic tone or negative predestination of Rony's future in

the mind of his parents.

An Inclusive Institution

From the diagnosis issued by a specialist in disorders in childhood, the process seemed to

flow naturally. "We took the diagnosis to school; the year was already ending so the next year

we saw how they implemented a plan with the teachers" (Parents interview). Parents remember

that teachers reduced the number of exams questions. If they saw that it was difficult for him to

answer, they passed an oral exam or gave him more time for some activities. Teachers did not

request to him taking notes of everything in the class and they allowed him to photocopy notes

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from his classmates. Teachers also let him walk in the classroom during the class because they

knew that he needed it. “I liked that in my school, they let me walk when I needed it. It was more

like a family, but only now do I realize that.” (Rony interview). Teachers of the school in his

home country also allowed him to draw on his notebooks because they knew that this was his

way of paying attention. "His notebook was pure drawing. He filled it with drawings and then we

changed it several times in the year;" (Parents interview).

Too Many Changes

When Rony was 12 the family decided to move to another country, in another continent,

in another hemisphere, with another culture and another language. To these changes, a change in

academic level was added since Rony left his country studying primary level and started in the

new school in secondary. "The first year here was complicated because he had to face these

changes" (Parents interview). They saw the change as a great opportunity and they introduced it

in that way to their children. But this new situation was extremely frustrating for Rony. The first

difficulty was trying to be accepted by his classmates. Rony could not find friends or

companions. But the most difficult thing was actually dealing with the observations of the

teachers, who repeatedly complained to the parents that Rony walked in the classroom, that he

made too many drawings, that he did not participate with his peers, and did not contribute to the

class. The father reflects that "of course, he had only three months trying to learn the new

language and the teachers were criticizing him for not participating in the group" (Parents

interview). In Rony’s words: “it bothered me that the teachers thought that I did not do anything,

or that I was lazy, but I was learning English” (Rony interview).

From the beginning of the academic year, Rony's parents explained the situation to the

school Principal and teachers, they gave them the diagnosis and bibliography on the subject

10

trying to give them tools to handle Rony. But "the support of the school was almost null because

they did not have the knowledge and the skills to deal with him since they did not have a

multidisciplinary team, they did not know what to do" (Parents interview). This situation was

amplified by the natural pedagogical change that occurs between primary and secondary.

Suddenly, Rony met with teachers who taught the content but left it up to the students to study

by themselves for the exams. At the end of the year, Rony was stressed. He showed great

apprehension the night before starting each week of class and had repeated crises of crying in

which he expressed his desire not to return to the classroom and that he no longer wanted to live

like that.

A Needed Change

In this context, Rony's parents searched for other schools to enroll him. In this process,

they find a small school in which no more than 12 students attend each course. The parents were

convinced that this school was better when they saw that the classes were taught with books that

explained each procedure in detail and that the students could write on their own textbooks. This

instruction of detailed steps was even noticed by Rony when he said that “it's like I'm learning

more, it's like I learn more easily. The teachers go straight to the point. They explain how to do

the exercises step by step” (Rony interview). "These textbooks are so detailed that anyone can

learn only by reading because they do not skip steps and give examples" (Parents interview). The

importance of the textbook not only lies in the good choice of instructional material but in that

Rony enjoys reading a lot by himself. “I like reading a lot, even if you give me a stack of books I

would throw out the iPad and I would read the whole day” (Rony interview). His learning is

basically visual and through texts, which meant a critical pedagogic adaptation to allow Rony to

be more independent in his learning. Rony's parents noticed that teachers modify the way they

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take exams, combining written and oral exams. Another characteristic of the new school is that

the teachers give extra classes specially oriented to the areas in which Rony needs more

personalized support. As a result of these changes, Rony is less stressed and finds space and

flexibility to channel his sensory saturation as they let him walk freely through the school when

he needs it.

There is an administrative aspect that Rony's parents noticed differently. The director of

the establishment does a personalized follow-up with each teacher inquiring about how the

necessary adjustments are being made for each student. The professors know that they must be

proactive generating the necessary adjustments since they will be evaluated in this regard.

Regarding Rony's future schooling, the parents reflect that they regret that the new school does

not share their religious beliefs but "why would we return to the school of my religion if I do not

see that the teachers have changed. Actually, they are relieved that my son is no longer in their

school. " Apparently, at least for the next year, Rony will not experience more school changes.

CONCLUSION

Rony's experience confirms that the moment of the diagnosis generates a great relief for

the parents and allows to initiate the treatment and the necessary adjustments. On the other hand,

the ability of inclusion of a school appears to be linked to four fundamental aspects in the case of

adolescents with Asperger: (a) the willingness to work with specialists in interdisciplinary teams,

(b) the presence of friendly and family environments able of individualizing and understanding

each case, (c) an instruction model based on concrete and detailed explanations, and (d)

individualized adjustments when applying evaluations.

The changes of routine, environment, school, friendships, and academic level are triggers

of stress and sensory saturation for an adolescent with Asperger. But when these changes occur

12

along with a new school with little experience in including students with this syndrome, the

situation is more complex. In this sense, and based on the experience reported by Rony and his

parents, a school with inclusion difficulties could be defined as an environment with a rigid

instructional plan that applies equally to all learning styles. Said school does not manage to

design individualized instruction plans even having diagnoses issued by specialists that account

for such need. It is interesting to remember that Asperger is defined as an Autism of high

functionality, which is evident in the case of Rony because with great difficulty, Rony was able

to cope with a process marked by too many changes in a short period of time. Everything

changed around Rony, but paradoxically the school did not do it.

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Cohler, B. J., & Weiner, T. (2011). The inner fortress: Symptom and meaning in Asperger's syndrome. Psychoanalytic Inquiry, 31(3), 208-221. doi:10.1080/07351690.2010.513592

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Farrimond, H. (2013). Doing ethical research. Houndmills, Basingstoke, Hampshire: Palgrave Macmillan.

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Peters, R., & Brooks, R. (2016). Parental perspectives on the transition to secondary school for students with Asperger syndrome and high-functioning autism: a pilot survey study. British Journal of Special Education, 43(1), 75-91. doi:10.1111/1467-8578.12125

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APPENDIX

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