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Recognition and management of Asperger’s syndrome: perceptions of primary school teachers Vincent Agyapong, Maria Migone, Charles Crosson, Benedict Mackey Ir J Psych Med 2010; 27(1): ??-??

training for all primary school teachers in the recognition and management of children with Pervasive Developmental Disorders (PDD). The recognition and management of children with PDD should also be included in the curriculum of all undergraduate teacher training institutions in Ireland

Abstract Background: Most children who have Asperger’s syndrome are not identified until early school age, when social difficulties with other children become evident. Consequently, primary school teachers have an important role to play both in the recognition and management of the condition. Objectives: Our study sought to examine the perception of primary school teachers regarding the recognition and management of Asperger’s syndrome (AS). Methods: A structured questionnaire on the recognition and management of Asperger’s syndrome was circulated to all 90 primary school principals in the Fingal County of Dublin for them to copy and distribute to teachers in their schools for completion. Self-addressed envelopes were provided to each principal for the return of completed questionnaires. Results: 343 completed questionnaires were returned by 54 out of the 90 school principals. 58% of respondents reported that they had ever taught a child with the condition and 49% reported that recognition and management of emotional and behavioural disorders was covered in their undergraduate training. 78.4% said that they would recognise the symptoms of AS in a child, with those who had training on the recognition and management of emotional and behavioural disorders being more likely to report that they would recognise such symptoms. 71.1% said children with Asperger’s syndrome should be taught in mainstream classes. However, 77.3% did not think main stream schools are presently adequately resourced to cater for children with Asperger’s syndrome. 96.2% said they would you like to receive in-service training from the Child and Adolescent Mental Health Services on the detection and management of children with Asperger’s syndrome. Conclusion: There is a need for formal in-service

Key words: Asperger’s syndrome (AS); Autistic spectrum disorders; Primary school; Teachers; Training. Introduction About 10% of the world’s population lives with a disability.1 A small proportion of this group of people suffers from Asperger’s syndrome (AS). Ireland is a party to the European Convention on Human Rights and was one of the first states to sign the International Convention on the Rights of Persons with Disabilities at UN Headquarters in New York on March 30, 2007.2 AS belongs to the group of pervasive developmental disorders (PDD) or neurodevelopmental disorders and is characterized by a triad of symptoms, namely: • Qualitative impairments in reciprocal social interaction • Restricted, stereotyped, and repetitive patterns of behaviours, interests, and activities and • Disordered verbal and nonverbal communication.3 Asperger’s syndrome is often used to mark a subgroup at the more able end, in terms of social and communication difficulties, within the spectrum of PDD. Lack of delay in language development is a requirement, and although the ICD-10 acknowledges this category, it remains a subject for debate and research to establish how distinct the subgroup is.4 The current view is that AS is a variant of autism and located at the milder end of pervasive developmental disorders.1 Recent research in the US suggests prevalence for autistic spectrum disorders of 4.5 – 9.9/1000 children aged eight years with up to 1/152 of all American’s suffering from the disorder.5 The prevalence rate for autistic spectrum disorders in the UK is about 1 /100.6 A recent Finish study put the prevalence rate of AS at 1.6-2.9/1000 for children aged eight years.7 Young children who have autistic disorder usually exhibit marked impairments in all three domains of the triad of symptoms before the age of three years. However, individuals with AS do not show Intellectual Disability and language acquisition delay as in autism. 8 Consequently, most children who have Asperger’s syndrome are not identified until early school age, when social difficulties with other children including social isolation and behaviours such as aggression and tantrums which usually serve communicative purposes become impossible to ignore.9

*Vincent IO Agyapong, BSc, MBChB, DCP DHSM MSc MRCPsych MFFLM , Clinical Lecturer & Senior Registrar in Psychiatry, Department of Psychiatry, University of Dublin, Trinity College and St Patrick’s University Hospital. Email: [email protected] Maria Migone, MB, MRCPsych, MSc, Consultant Child and Adolescent Psychiatrist, Castleknock Child and Family Centre, Dublin 15, Charles Crosson, Dip. in Child Care, Child Care Leader, Castleknock Child and Family Centre, Dublin 15, Benedict Mackey, MB, MRCPsych, MSc, Consultant Child and Adolescent Psychiatrist, Castleknock Child and Family Centre, Dublin 15, Ireland. *Correspondence submitted: Auguast 9, 2008. accepted: April 9, 2009.

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Ir J Psych Med 2010; 27(1): ??-??

parameters related mainly to widely recognised and internationally accepted clinical features of AS and its management as compiled from the relevant literature. A copy each of the questionnaire was posted to 90 primary school principals in the Fingal County of Dublin with the request that they make copies and distribute to teachers in their schools for completion. Self-addressed envelopes were also provided to each principal for the return of completed questionnaires. The results of the study were analysed using SPSS version 16.

Figure 1: Teaching experience of participants

8.5% 33.8%

9% 23.6%

Results Three hundred and forty three completed questionnaires were returned by 54 out of the 90 schools surveyed giving a school participation rate of 60%. Figure 1 shows the teaching experience in years of the teachers. All the teachers reported that they had heard of Asperger’s syndrome with 58% reporting that they had ever taught a child with the condition. Only 49% of the teachers reported that recognition and management of emotional and behavioural disorders was covered in their undergraduate training. Teachers with less than five years experience were more likely to report that recognition and management of emotional and behavioural disorders was covered in their undergraduate training than those who had more than five years teaching experience (OR 5.3, 95% CI 3.270936- 8.4946, P =0.00). Overall, 78.4% of all teachers said that believed they would recognise the symptoms of AS in a child, with those who had training on the recognition and management of emotional and behavioural disorders being more likely than those who did not have such training to report that they believed they could recognise the symptoms of AS (OR 3.4, 95% CI 1.942 6.051, P=0.00). Ninety seven per cent of all teachers said they believed AS is an autistic disorder whilst the remaining said it was a psychiatric disorder. When they were asked about which particular symptoms would make them think of a child as possibly having AS, the results is as shown in Figure 2 with an explanation of the symptom codes below the figure. When asked if they thought children with Asperger’s syndrome should be taught in mainstream classes, 71.1% answered yes, with those who had training on the recognition and management of emotional and behavioural disorders being more likely than those who did not have such training to answer yes, although the difference was not statistically significant (OR of 1.3, 95% CI 0.82- 2.15, P=.15). However, when asked if they thought that main stream schools are presently adequately resourced to cater for children with Asperger’s syndrome, 77.3% answered no with those with more than five years teaching experience more likely to answer no compared to those with less than five years teaching experience ( OR 2.5, 95% CI 1.46-4.1359, P=0.0005). With regards to resources that should be available to main stream schools with children who have Asperger’s syndrome, Figure 3 shows the opinion expressed by the teachers. When asked about how children with AS should be managed, most teachers chose multiple options as shown in Figure 4. With regards the long term outcome for children with AS, 89.9% of all teachers believed the child with AS could be integrated into society. Again, 87.2% of the teachers said they saw the need for closer collaboration between schools

25.1% Less than 1 year

1-2 years

2-5 years

5-10 years

More than 10 years

Asperger’s syndrome is associated with a better prognosis than autism because of the relatively good IQ and language skills.10 It has however been proposed that mildness of the ‘handicap’ in AS is what makes its emotional and social impact so severe.11 AS can be misdiagnosed as a variety of conditions requiring contradictory treatments and having a range of outcomes.12 This makes an appropriate and early diagnosis of the condition imperative. Furthermore, 65% of adolescents and adults with Asperger’s syndrome have a comorbid anxiety and depressive disorder13 and children are likely to present with comorbid ADHD.14 Asperger’s syndrome is also associated with tics, Tourette syndrome, and bipolar disorder, and the repetitive behaviours of Asperger’s syndrome have many similarities with the symptoms of obsessive compulsive disorder and obsessive-compulsive personality disorder.15 One study of males with Asperger’s syndrome found an increased rate of epilepsy and a high rate (51%) of nonverbal learning disability.16 Given that most of the symptoms of Asperger’s syndrome first manifest in primary school, it is essential that primary school teachers are familiar with the symptoms and management of the condition so as to help achieve these children’s full potential. Despite the abundance of published information about the recognition and management AS, as far as the authors could find, to date there are no previous studies examining the perception of teachers about the recognition and management of Asperger’s syndrome and literature on this subject is non-existent.

Objectives of the study Given the above introduction, the study aimed to examine the perception of primary school teachers about the recognition and management of Asperger’s syndrome. Methodology A structured questionnaire on AS was designed to assess parameters relevant to the objectives of the study. These ??

Ir J Psych Med 2010; 27(1): ??-?? Figure 2: Percentage of teachers recognising specific symptoms of Asperger’s syndrome 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% A

B

C

E

D

F

G

Symptom code 84%

87.5%

84%

58%

69.7%

90.4%

64.4%

Explanation of symptom code: A = Lack of empathy B = Little or no ability to form friends C = Naïve, inappropriate, one-sided interaction D = Abnormal, repetitive speech E = Poor non-verbal communication F = Intense absorption in certain subjects G = Clumsy and ill-coordinated movements and odd postures.

cured.18 Appropriate intervention in schools are therefore required to prevent lapses in the areas of appropriate classroom behaviour, basic functional communication skills, and in overcoming common social situations which can limit a student’s educational progress.19 Students with PDD thrive in settings that are well-structured and task-oriented. They also prefer settings with goals that are clear to teachers and students and offer individualised programmes.20 A teacher who is able to recognise the features of AS may seek the appropriate intervention early, especially when the pupil is a victim of bullying in school or suffering educational set backs. Our results show that undergraduate teacher training programmes which incorporate the recognition and management of emotional and behavioural disorders may better equip teachers to recognise AS. There was no statistical difference in opinion between those who had training on the recognition and management of emotional and behavioural disorders as part of their undergraduate course and those who had not regarding whether children with AS should be taught in main stream schools. A high proportion of both groups expressed the opinion that they should be taught in main stream schools. The Irish Human Rights Commission (IHRC) identified

and psychiatric services in the management of children with Asperger’s syndrome with no difference in response between those who had training and those who did not. 96.2% said they would like to receive in-service training from the Child and Adolescent Mental Health Services on the detection and management of children with Asperger’s syndrome.

Discussion With the increasing awareness of Asperger’s syndrome, it becomes increasingly important that all professionals including teachers have a clear understanding of the condition.17 Our study shows that a significantly higher proportion of all primary school teachers who had training on the recognition and management of emotional and behavioural disorders as part of their undergraduate training thought they would be able to recognise the features of AS in pupils than those who did not have such training. This may support the inclusion of training on the recognition and management of emotional and behavioural disorders in the curriculum of all undergraduate teacher training institutions in Ireland. Several studies exploring the efficacy of treatment suggest that, with intensive intervention, PDD sufferers can show vast improvement, with some even appearing to have been Figure 3: Teachers’ perception of resources needed by main stream schools

120% 100% 80% 60% 40% 20% 0%

Educational psychologist 95.3%

Speech and language therapist

Occupational therapist

79.9%

72.9%

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Special needs assistant 96.2%

Other 0.9%

Ir J Psych Med 2010; 27(1): ??-?? Figure 4: Teachers’ perception of how Asperger’s syndrome should be managed

100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% A 89.80%

B 92.10%

C 8.20%

D 48.40%

E 93.90%

F 10.50%

Explanation of management code: A = Education and information about the condition B = Behaviour management C = Medication D = Specialized educational interventions E = Language therapy F = Other.

and approaches to providing adequate educational support and resources. In particular, it was considered that comprehensive and integrated services capable of addressing successfully the needs of people with PDD in Ireland did not exist.21 Our study found that many teachers believed that children with AS could be integrated into society. We also found that both teachers who received training in the recognition and management of AS as part of their undergraduate training and those who did not expressed the need for a closer collaboration between schools and psychiatric services on the management of AS, and almost all the teachers said they would like to receive in-service training from Child and Adolescent Mental Health Services (CAMHS) on the management of Asperger’s syndrome. This is currently not the role of CAMHS, as schools fall under the remit of the Department of Education and Science. The Department of Education and Science has not to date provided any clear guidance regarding this issue or identified which professionals, such as for example the National Educational Psychological Services (NEPS), might be best placed to deliver such a training and consultation service. These findings are relevant and demonstrate an unmet thirst for knowledge by primary school teachers on the recognition and management of Asperger’s syndrome. Migone et al surveyed teachers and special needs assistants attending a training module on mental health regarding their knowledge and confidence in identifying psychiatric disorders (including PDD) in school children. The vast majority of teachers and SNAs felt more confident in identifying these conditions in pupils, and in their knowledge about management of the conditions following the pilot training programme.23 Our study has some limitations. Firstly, the sample participants comprised only of teachers in Fingal County of Dublin making generalisation of the findings to all teachers in Ireland impossible. It would be necessary for further studies on the

the lack of special needs assistants in schools as well as other necessary supports as some of the factors that inhibit full access to education for children with PDD.2 The Irish Task Force on Autism also recommended that every school should have a designated special needs co-ordinator who would coordinate procedures for a baseline developmental assessment on each child. 21 These observations and recommendation are consistent with our study which found that about 96% of all primary school teachers believed that special needs assistants are a valuable resource required by schools catering for children with AS. Teachers can play a vital role in helping children with AS learn how to overcome challenges around them. Research has supported the effectiveness of a range of interventions, with the emphasis on behavioural and educational approaches.2 This includes the more traditional communication, occupational and sensory integration therapies, regular and special education services, as well as the various therapies often referred to as applied behavioural analysis (ABA).22 Our study shows that most teachers recognise the need for a multidisciplinary approach to the management of AS with schools requiring educational psychologists, speech and language therapists, occupational therapists and special needs assistants to help target specific problem areas in children with AS. The study also showed that the majority of teachers believed Irish schools are not presently adequately resourced to manage children with AS. This finding is consistent with an observation by the IHRC which states that there remain some significant outstanding issues across the areas of education, health, housing and social welfare provision for people with disabilities in Ireland.2 It is also consistent with submissions to the Task Force on Autism in 2001 which indicated widespread dissatisfaction with existing services for people with disorders on the autistic spectrum. The Task Force on Autism’s report further indicated that there was widespread disquiet about the level and quality of provision ??

Ir J Psych Med 2010; 27(1): ??-?? 2. The Asperger Syndrome Association of Ireland, Your Guide to Human Rights and Asperger Syndrome, Human Rights and Disabilities, http://www.aspire-irl.org/aspire_ HumanRights_HRdisabilities.htm (Assessed on-line on 1st August 2008) 3. Marja-Leena Mattila et al , An Epidemiological and Diagnostic Study of Asperger Syndrome According to Four Sets of Diagnostic Criteria J. AM. ACAD. CHILD ADOLESC. PSYCHIATRY, 46:5, MAY 2007 4. Jordan, R. Autistic Spectrum Disorders: An Introductory Handbook for Practitioners. London: David Fulton Publishers, 1999; 13--25. 5. CDC. Prevalence of Autism Spectrum Disorders- Autism and Developmental Disabilities Monitoring Network, six sites, United States, 2000. In: Surveillance Summaries, Feb 9, 2007. MMWR 2007;56 (No. SS-1):1—11. ( http://www.cdc.gov/ mmwr/pdf/ss/ss5601.pdf ) 6. Green, H. et al (2005). Mental health of children and young people in Great Britain, 2004. Basingstoke: Palgrave Macmillan. 7. Mattila Marja-Leena et al; An Epidemiological and Diagnostic Study of Asperger Syndrome according to Four Sets of Diagnostic Criteria, Journal of the American Academy of Child & Adolescent Psychiatry, v46 n5 p636 May 2007 8. Volkmar F R & Klin A (2000). ‘Diagnostic issues in Asperger syndrome.’ In Klin A, Volkmar F R & Sparrow S S (eds.) Asperger syndrome. New York: Guilford Press. 25-71. 9. H. Tager-Flusberg, E. Caronna, Language Disorders: Autism and Other Pervasive Developmental Disorders. Paediatric Clinics of North America, Volume 54, Issue 3, Pages 469-481 10. Tony Charman, Autism spectrum disorders, PSYCHIATRY 4:8 2005 The Medicine Publishing Company Ltd 11. Tantam D (2000) Psychological Disorder in Adolescents and Adults with Asperger’s Syndrome, Autism, Vol. 4, No. 1, 47-62 12. Fitzgerald M. and Corvin A. ; Diagnosis and differential diagnosis of Asperger syndrome ; Advances in Psychiatric Treatment (2001) 7: 310-318 13. McPartland J, Klin A (2006). “Asperger’s syndrome”. Adolesc Med Clin 17 (3): 771–88. doi:10.1016/j.admecli.2006.06.010. PMID 17030291. 14. Ghaziuddin M, Weidmer-Mikhail E, Ghaziuddin N (1998). “Comorbidity of Asperger syndrome: a preliminary report”. J Intellect Disabil Res 42 (4): 279–83. PMID 9786442. 15. Gillberg C, Billstedt E (2000). “Autism and Asperger syndrome: coexistence with other clinical disorders”. Acta Psychiatr Scand 102 (5): 321–30. doi:10.1034/j.16000447.2000.102005321.x. PMID 11098802. 16. Cederlund M, Gillberg C (2004). “One hundred males with Asperger syndrome: a clinical study of background and associated factors”. Dev Med Child Neurol 46 (10): 652–60. doi:10.1111/j.1469-8749.2004.tb00977.x. PMID 15473168. 17. Matt Winter, Asperger’s Syndrome - What Teachers Need to Know (http://www.jkp. com/catalogue/book.php/isbn/9781843101437 Assessed on-line 25th July 2008) 18. McEachin JJ, Smith T, Lovaas O. Long-term outcome for children with autism who received early intensive behavioural treatment. Am J Ment Retard 1993; 97(4):359–72. 19. National Research Council. (2001). Educating Children with Autism. Washington, DC: National Academy Press. 20. M Rutter, The riddle of autism: A psychological analysis, Lexington, Mass. (1983). 21. Educational Provision and Support for Persons with Autistic Spectrum Disorders: the Report of the Task Force on Autism, October 2001, http://www.education.ie/robots/ view.jsp?pcategory=17216&language=EN&ecategory=29359 (Assessed on-line 25th July 2008) 22. Pauline A. Filipek et al, Intervention for Autistic Spectrum Disorders, The Journal of the American Society for Experimental NeuroTherapeutics ,Vol. 3, 207–216, April 2006 23. Migone M, Murtagh A, Lennon R & Mc Nicholas F , Teaching the Teachers: A Pilot Training Programme for Primary School Teachers in Ireland, Paper presented as a poster at Royal College of Psychiatrist Faculty of Child and Adolescent Psychiatry Annual Residential Meeting in Liverpool, 17-19th September 2008.

subject with a representative sample of teachers from all counties in Ireland. Secondly, our results show the proportion of teachers who reported that they could recognise specific symptoms of AS and these may not necessarily reflect the true ability of the teachers to recognise these symptoms in a child with AS. Notwithstanding these limitations, the findings of the study are hugely relevant as they could form the basis upon which further research into the subject could be carried out.

Conclusion The educational and emotional implications of not being formally identified with AS are significant; hence a system needs to be established to screen for the disorder. This system should include the incorporation of the recognition and management of children with PDD in the curriculum of all undergraduate teacher training institutions in Ireland. Regular formal in-service training for all primary school teachers would also be useful to update the knowledge of teachers about the condition and its management. It appears that more resources are also required by schools to cater for children with disabilities, including AS. Finally, Child and Adolescent Mental Health Services (CAMHS) and schools need to work more closely in relation to those children with Asperger’s syndrome who attend CAMHS, to optimise the limited resources currently available to help those with PDD. Declaration of Interest: None

Acknowledgement We would like to express our appreciation to Dr Yaw Bimpeh, statistician with the Road Safety Authority in Ballina, Co Mayo for providing statistical support for the study. References 1. United Nations enable, Rights and Dignity of Persons with Disabilities, Fact sheet on Persons with Disabilities, http://www.un.org/disabilities/default.asp?id=18 (Assessed on-line on 1st August 2008)

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