': Comparing Parent and Teacher Perceptions in

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‘Oh No He Doesn’t!’, ‘Oh Yes He Does!’: Comparing Parent and Teacher Perceptions in Tourette’s Syndrome DEBORAH CHRISTIE Middlesex Hospital, UK

AMITA JASSI Middlesex and Great Ormond Street Hospitals, UK

A B S T R AC T Tourette’s syndrome is a complex and distressing condition characterized by vocal and motor tics. It is also associated with attentional and obsessional difficulties, which may be of greater concern than the tics to the child and their family. Parents attending specialist clinics report that attentional and learning difficulties are their greatest concern. Teachers are also concerned with attentional problems. However, overall, they report fewer behaviours as being of concern and rate those that they do report as less severe than parents. This can lead to conflict, with parents often feeling blamed and criticized for poor parenting. The article emphasizes the need for comprehensive and systemic assessment of children incorporating multiple perspectives. The need for a combination of treatment approaches, including the provision of educational material to help teachers understand the complex nature of Tourette’s syndrome, is described. K E Y WO R D S behaviour problems, parental and teacher reports, Tourette’s syndrome

D E B O R A H C H R I S T I E is a Consultant Clinical Psychologist with the Adolescent Medical Unit at University College London and Middlesex Hospitals, Honorary Senior Lecturer and Honorary Consultant Clinical Psychologist at Great Ormond Street Hospital Tourette’s Syndrome Clinic. Research interests include psychological management of chronic illness, somatizing disorders in adolescence and neuropsychological aspects of anorexia nervosa in children and adolescents. C O N TA C T : Department of Child and Adolescent Psychological Services, North House, Middlesex Hospital, Cleveland Street, London W1T 3AA, UK.

is a third-year Psychology undergraduate at Brunel University, West London. Currently undertaking an assistant psychologist post at Middlesex and Great Ormond Street Hospitals, on an undergraduate work placement. Research interests include coping styles in adolescents with chronic pain syndrome and disinhibition in children with Tourette’s syndrome.

A M I TA JA S S I

Clinical Child Psychology and Psychiatry 1359–1045 (200210)7:4 Copyright © 2002 SAGE Publications (London, Thousand Oaks and New Delhi) Vol. 7(4): 553–558; 027566 553

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CLINICAL CHILD PSYCHOLOGY AND PSYCHIATRY 7(4)

Introduction TOURETTE’S SYNDROME

(TS) is a condition that is characterized by sudden, rapid, recurrent, non-rhythmic, stereotyped motor movements and/or vocalizations known as tics. Onset typically occurs before the age of 18 years, with boys three times more likely than girls to be affected. The tics can vary in complexity from simple eye blinks, shrugs or grimaces to more complex gestures, including smelling or touching objects or people. Vocal tics also range from simple to complex with squeaks, coughs and grunts common examples of the former. The complex verbal tic, known as coprolalia or ‘dung speech’, is often thought to be a defining feature of the condition. In reality this only occurs in about 20–30% of sufferers, who also tend to be at the more severe end of the spectrum (Jankovic, 1993). Other complex vocal tics can include repetition of their own (palilalia) or someone else’s speech (echolalia). Both multiple motor and vocal tics are usually present although not necessarily concurrently. Not only can the part of the body affected by the tics alter over time, but also the frequency and severity of the tics can wax and wane. This may mean that very mild cases may not cause concern and therefore not come to medical attention. It is likely therefore that the current prevalence rate of 5 per 10,000 (Sachdev, 1995) might be a significant underestimate. A recent study by Mason, Banerjee, Eapen, Zeitlin, and Robertson (1998) looking at the prevalence of TS in a mainstream school population suggests that TS in the community as a whole is more common and milder than previously described in secondary or tertiary health-care service settings. Although the tics themselves can be embarrassing, annoying or even exhausting it is often the additional co-morbid symptoms that make TS one of the most complex and distressing of conditions. Other features associated with the disorder include aggressive behaviour, poor peer relationships, low self-esteem, anxiety, depression, obsessivecompulsive behaviour, impulsivity, restlessness and attention-deficit. The degree to which these associated features occur can vary in severity over time, resulting in a constantly changing, heterogeneous constellation of symptoms (Vogt & Carroll, 1999). The presence of the secondary co-morbid features will often result in a referral to a specialist clinic. Dooley, Brna, and Gordon (1999) found that attention and learning difficulties were described by parents as the most significant symptoms of concern. A paradoxical feature of the disorder is the extent to which many children appear able to suppress their ‘involuntary’ symptoms, particularly the tics. The suppression appears to be an unconscious response to the degree to which the children feel threatened or made anxious by their environment. Paradoxically, symptoms may also reduce when the child is either relaxed or distracted, for example, taking part in an absorbing activity. The degree to which this occurs varies from child to child. Some children have no overt symptoms at school, whereas others are only able to suppress a few behaviours. The effect of suppression has a similar effect to jamming a cork into the spout of a boiling kettle. There is a gradual increase in tension throughout the day until the child gets home. Parents report a significant increase in tics, often accompanied by temper tantrums and other features of TS, shortly after getting home.

Case examples Adam is a 13-year-old boy, reported by his parents to exhibit multiple motor and vocal tics. These tics were also reported by Adam and were observed in the clinic. The tics were suppressed at school. Adam tended to exhibit obsessional and attentional symptoms at school. This made it difficult for him to concentrate in class, he was disruptive and had 554


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outbursts of anger and frustration where he became violent. The teachers had told Adam’s parents that they didn’t think he had TS and that ‘he just needed firmer boundaries at home’. They were threatening to exclude him. Chris is a 14-year-old boy with an older brother and sister who both live at home. Chris is described by his mother as completely out of control. He has broken doors and windows in the house and verbally and physically abuses his sister. He and his brother are often violent towards each other. Chris has outbursts of tics when he gets home from school, which leave him completely exhausted and frustrated and he can get very angry and aggressive. He finds it difficult to remember homework set by his teachers and loses his books. His teachers describe him as disorganized and complain to his mother about him not doing his homework. They have never seen any violent behaviour and are not aware of the severity of his tics.

Studies directly comparing the difference between symptoms reported by parents and teachers (Carter, Pauls, Leckman, & Cohen, 1994; Grad, Pelcovitz, Olson, Matthews, & Grad, 1987; Lanser, Van-Santen, & Jennekens-Schinkel, 1993; Nolan, Sverd, Gadow, Sprafkin, & Ezor, 1996) find teachers tend to report fewer problems than parents. The greatest discrepancy reported was for internalizing problems, for example, withdrawn and anxiety problems, which was explained by parents’ greater sensitivity to internal problems. Discrepancies between parents’ and teachers’ perceived experiences can lead to conflict between home and school. These conflicts are usually around explanations of causality of behaviour, the diagnosis and treatment plans.

Study A recent study of ours confirmed these impressions. The teachers of 49 boys diagnosed with Tourette’s syndrome (using DSM-IV criteria) were contacted (with the parents’ permission) and asked to complete the Achenbach Teacher Report Form (TRF). Thirtyfive teachers returned the TRF, which is a parallel form with the same 118 behaviours as the Achenbach Child Behaviour Checklist (CBCL). The mean age at completion was 10.18 years (SD 2.5). The age range was 5–17 years. The teachers’ responses were compared with those of the parents who completed the CBCL (see Table 1). Parents reported 10–30 times the expected proportion (2%) of children scoring above the 98th percentile level (t score = 70). Seventy-seven percent were above the clinical cut-off on at least one scale, 36% above on at least four scales and 6% on all eight domains. The teachers’ mean scores were consistently lower than the parents’ by 5–18 points. This was significantly different for all behaviours (paired sample t-test, p < .01). However, despite the lower absolute values teachers still reported 2–8 times the expected number of boys above the 98th percentile. Thirty percent were above the clinical cut-off point on at least one scale and 16% above on at least four scales. No children were scored by teachers in the clinical range for withdrawn behaviour, compared with 20% by the parents.

Discussion The results of this study confirm our clinical experience that the parents of boys with Tourette’s syndrome report higher numbers of behaviour problems than do class teachers. Severity of concern is also higher for parents. For both parents and teachers the area of greatest concern was in attention problems. Although teacher reports are consistent with those of parents in some areas they do not identify withdrawn behaviour, 555


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Table 1. Mean t-scores and SD for the parent CBCL (n = 49) and TRF (n = 35). All of the parent and teacher scores are significantly greater (one sample t-test; p < .001) than the theoretical norm of 50 (SD = 10). Scores between 60 and 70 are in the borderline range. Scores > 70 are in the clinical range. All of the parent values are significantly greater than a more conservative value of 60. Paired-samples t-values with significance level are given in next column for comparisons between the parent and teacher ratings. The last two columns show the percentage of children obtaining a t-score greater than 70 (i.e. 2 SD > mean) Achenbach factor

Parent t-score mean (SD)

Teacher t-score mean (SD)

Paired-sample Parents % t-value (p value) over 70

Withdrawn

61.3 (9.78) 64.5 (10.62) 67.7 (12.11) 68.0 (13.56) 68.0 (12.61) 74.44 (13.74) 63.65 (10.82) 69.34 (14.09) 69.83 (12.78) 66.40 (12.32) 65.77 (14.01)

55.2 (6.47) 57.7 (9.62) 59.1 (7.25) 59.4 (9.78) 59.05 (9.41) 60.8 (9.97) 55.89 (6.80) 58.21 (8.17) 59.05 (10.80) 57.54 (10.51) 55.43 (10.79)

3.11 (.004) 3.90 (.000) 4.26 (.000) 4.49 (.000) 4.63 (.000) 6.91 (.000) 4.17 (.000) 5.72 (.000) 5.79 (.000) 4.10 (.000) 5.50 (.000)

Somatic Anxiety Social problems Thought problems Attention problems Delinquency Aggression Total t Internalizing t Externalizing t

Teachers % over 70

20

0

22

5

33

11

43

16

43

16

59

14

24

5

49

8

63

14

41

14

45

8

somatic behaviour and anxiety to be of significant concern. Frank, Sieg, and Gaffney (1991) found that parents had a tendency to elevate ratings of somatic complaints, whereas Stokes, Bawden, Camfield, Backman, and Dooley (1991) found that teachers are more likely to rate children with TS as withdrawn and aggressive compared with a normal group of children matched for sex and age. Our results are very similar to those of Nolan et al. (1996) with 60% of the sample obtaining a high total problem score (70 or above). Nolan et al. (1996) have hypothesized that teachers might underestimate the extent of internalizing problems. Wodrich (1998) has suggested that this was because teachers cannot pay as much attention or give as much individual time as may parents. Another possible explanation is that parents have a more direct and personal relationship with the individual child and a greater understanding of their child’s behaviour (Miller, 1995). An alternative perspective may be that teachers have a more informed viewpoint and feel that the child’s behaviour problems are not severe compared with others in the class. At least 20% of children are likely to have some educational needs during their school career. The implications for treatment strongly suggest the need for a comprehensive systemic assessment that incorporates these multiple perspectives. It is usual for children not to show tics during the clinical interview but which are readily observed as they walk out 556


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of the clinic. These different views are often a cause for conflict. Parents describe teachers as unsympathetic or blaming, whereas teachers describe frustration with children who perform at reasonable levels in school yet consistently fail tasks set as homework. Parents explain that significant outbursts of tics produce frustration, anger and exhaustion often making it hard for the child to complete homework assignments. It also true that impulsive or distractible behaviour may be managed through behavioural contingencies in the classroom. In contrast, these same behaviours may be less well controlled in the home environment by parents who have limited formal experience of behavioural techniques. This feeds into the view of the family environment as ‘causal’, producing blame and anger, and ultimately little change. Although medication has been shown to be highly effective in the reduction of the tics, psychological treatment incorporating family therapy, parental counselling, behaviour management skills and psychoeducation for all those identified as being part of the child’s network has an equally important role in the management of the non-core symptomatology. In Adam’s case, following a multidisciplinary assessment a detailed report describing the clinical features of Tourette’s syndrome emphasizing the variability and complexity of the symptoms was sent to and discussed with the school. This allowed the teachers to acknowledge the difficulties the parents reported and develop a coordinated and collaborative programme to support Adam in both environments. For Chris a network meeting helped the teachers identify ways that he could be helped to complete his homework in school at the beginning of the day before he got tired and the tics got hold. This improved things at home and at school.

Less is known about the views of the young people concerned. Our experience is that the children have good insight and awareness of the impact their behaviour has on their family (Lambert & Christie, 1998; Wigley et al., 1999). They are also conscious of behaving differently in different environments although the extent to which they have conscious control over this is unclear. Our approach is to reassure parents that they are not to blame but do have a role to play in shaping behaviour. Teachers can be helped to understand how impulsivity, attention and tics are less controllable at home. They can be encouraged to think about modifying homework demands or creating a space in the school day to allow homework to be completed at school, reducing the pressure in the home environment. The Tourette’s syndrome clinic runs a support group for parents and offers regular workshops to teachers of all the children on the clinic register. These workshops have been well attended and include presentations from all members of the clinic team addressing the multi-factorial aspects of the syndrome. Problem-solving sessions are included addressing specific/individual challenges. Evaluations of the workshops have been extremely positive (Chowdury & Christie, 2002). Cognitive assessments which describe the individual profile of these children can also provide important information about areas of the curriculum that are problematic for the young person and identify teaching strategies that will reduce anxiety and concern. A combination of treatment approaches, including the provision of educational material to help teachers understand the complex nature of Tourette’s syndrome, is an essential part of the management of this frustrating and challenging disorder.

References Carter, A.S., Pauls, D.L., Leckman, J.F., & Cohen, D.J. (1994). A prospective longitudinal study of Gilles de la Tourette’s syndrome. Journal of the American Academy of Child and Adolescent Psychiatry, 33, 377–385. 557


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Chowdury, U., & Christie, D. (2002). Tourette syndrome: A training day for teachers. British Journal of Special Education (in press). Dooley, J.M., Brna, P.M., & Gordon, K.E. (1999). Parent perceptions of symptom severity in Tourette’s syndrome. Archives of Disease in Childhood, 81, 440–441. Frank, M.S., Sieg, K.G., & Gaffney, G. (1991). Somatic complaints in childhood tic disorders. Psychosomatics, 32, 396–430. Grad, L.R., Pelcovitz, D., Olson, M., Matthews, M., & Grad, G.J. (1987). Obsessivecompulsive symptomatology in children with Tourette’s syndrome. Journal of the American Academy of Child and Adolescent Psychiatry, 26, 69–73. Jankovic, J. (1993). Tourette’s syndrome: Phenomenology, pathophysiology, genetics, epidemiology and treatment. Current Neurology, 13, 209–217. Lambert, S., & Christie, D. (1998). A social skills group for boys with Tourette’s syndrome. Clinical Child Psychology and Psychiatry, 3, 267–277. Lanser, J.B., Van-Santen, W.H., & Jennekens-Schinkel, A. (1993). Tourette’s syndrome and right hemisphere dysfunction. British Journal of Psychiatry, 163, 116–118. Mason, A., Banerjee, S., Eapen, V., Zeitlin, H., & Robertson, M.M. (1998). The prevalence of Tourette’s syndrome in a mainstream school population. Developmental Medicine and Child Neurology, 40, 292–296. Miller, S.A. (1995). Parents’ attributions for their children’s behaviour. Child Development, 66, 1577–1584. Nolan, E.E., Sverd, J., Gadow, K.D., Sprafkin, J., & Ezor, S.N. (1996). Associated psychopathology in children with both ADHD and chronic tic disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 35, 1622–1630. Sachdev, P. (1995). Epidemiology: Diagnosis and natural history. An overview of Tourette’s syndrome. Paper presented at the 2nd Australian Conference on Tourette Syndrome and Related Disorders. Park Royal Hotel, Sydney, May. Stokes, A., Bawden, H.N., Camfield, P.R., Backman, J.E., & Dooley, M.B. (1991). Peer problems in Tourette’s disorder. Pediatrics, 87, 936–942. Vogt, A., & Carroll, A. (1999). The variation and variability of Tourette’s syndrome: A single case study approach. Clinical Child Psychology and Psychiatry, 4, 247–264. Wigley, K., Mason, A., Lambert, S., Collins, J., Lask, B., & Christie, D. (1999). A specialist service for children and adolescents with Tourette’s syndrome – Problems and attempted solutions. Clinical Child Psychology and Psychiatry, 5, 247–257. Wodrich, D.L. (1998). Tourette’s syndrome and tics: Relevance for school psychologists. Journal of School Psychology, 36, 281–294.

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