Mental health and special educational needs: exploring a complex relationship

Transcription

1 Mental health and special educational needs: exploring a complex relationship Richard Rose, Marie Howley, Ann Fergusson and Johnson Jament MENTAL HEALTH AND SEN The relationship between mental health and special educational needs is both complex and misunderstood. In this article, Richard Rose, Professor of Special and Inclusive Education, Marie Howley, Senior Lecturer, Ann Fergusson, Senior Lecturer, and Johnson Jament, a PhD student, all from the Centre for Special Needs Education and Research directed by Richard Rose at the University of Northampton, discuss findings from a national research project which explored the perceptions of pupil mental health needs by staff working in residential special schools. Teachers and other professional colleagues often feel illprepared to address mental health difficulties experienced by their pupils. This is, at times, exacerbated by a wider confusion when atypical behaviours are attributed to a diagnosed learning difficulty rather than being recognised as symptomatic of a mental health problem. The article suggests a need for clarification of the relationship between complex special educational needs and mental health and for increases in training opportunities and the development of resources for teaching about and supporting mental health and emotional well-being. Key words: mental health, special educational needs, learning difficulties, residential schools. Introduction The mental health needs of students with special educational needs have attracted considerable attention in recent years as parents, teachers and other professionals have become increasingly aware of the difficulties that many young people experience (Carpenter & Morgan, 2003; Foundation for People with Learning Disabilities, 2005; Coughlan, 2007; Morgan, 2007). At the same time, research into the incidence of mental health difficulties experienced by people with intellectual disabilities has begun to reveal details which suggest that higher than normal rates are being experienced within this specific population (Holland, 1999; Linna, Moilanen, Ebeling, Piha, Kumpulainen, Tamminen & Almqvist, 1999; Koskentausta, Livanainen & Almqvist, 2007). Emerson and Hatton s (2007) analysis of Office for National Statistics (ONS) data highlight the fact that children and adolescents with learning disabilities are over six times more likely to have a diagnosable psychiatric disorder than their non-disabled peers. However, as Emerson (2003) indicates, there is some need to exercise caution when making use of statistical data in this area. Factors that have an influence upon mental health include poverty, family stress and social isolation. Each of these conditions may be commonly associated with families who have one or more member(s) with a disability (Smyth & Robus, 1989; Fujiura & Yamaki, 2000; Emerson & Hatton, 2007). It is therefore important to recognise that the management of mental health in young people with special educational needs is likely to be most effective when a holistic approach is taken. Actions to ensure emotional well-being and good mental health must address not only the needs of the individual, but also those other familial and environmental factors that may have a negative impact. While an understanding of mental health and its management may have increased considerably in recent years, there remain many areas of confusion when considering this complex issue in relation to young people with special educational needs. Not least among the challenges faced by teachers are those associated with the assessment of emotional well-being in students who may exhibit behaviours that are commonly associated with a label such as autistic spectrum disorder (ASD), profound and multiple learning difficulties (PMLD) or attention-deficit/hyperactivity disorder (AD/HD). Reiss (1993) indicates the difficulties of identifying mental health problems in young people with learning difficulties. He brings particular attention to the potential for attributing atypical behaviours to a diagnosed learning difficulty, rather than recognising it as symptomatic of a mental health problem. The issue of identification of mental health difficulties in those with PMLD often involves either students being overlooked, or changes in behaviour being misinterpreted (Carpenter, 2004; Davies, 2004; Sheehy & Nind, 2005). Examination of these problems may well be essential if teachers and other professionals are to ensure that the mental health needs of a significant number of students are not to be misinterpreted. The challenges of this issue were confirmed by research recently undertaken into the emotional well-being of children and young people in residential special schools in England (NASS, 2007). While a number of other findings emerged from the study and are briefly outlined in this article, it was the challenges associated with the differentiation of mental health needs from other factors associated with conditions such as ASD, PMLD and AD/HD that appeared to present a specific difficulty for many teachers The Author(s). Journal compilation 2009 NASEN. Published by Blackwell Publishing, 9600 Garsington Road, Oxford, OX4 2DQ, UK and 350 Main St, Malden, MA, 02148, USA.

2 Furthermore, discussions with colleagues who have a wealth of experience in working with young people with special needs, or others who have a depth of knowledge of mental health, have suggested there are two areas of concern for many professionals: the difficulty of identifying the possible mental health difficulties experienced by some students, and the challenges of distinguishing between features of a named disorder and possible indicators of mental health problems. The project The impetus for the research project that identified this issue came from teachers working in residential special schools who expressed concerns about what they perceived to be an increase in mental health difficulties that they were encountering in pupils in their schools. Similar concerns were expressed about the lack of support provided for addressing this challenge, either from external agencies or through the provision of professional development for staff who were working with pupils on a daily basis. Much of the initial information gained regarding this matter was anecdotal, and there was difficulty in obtaining an accurate picture of either the extent or nature of the problem. Because of these difficulties, it was considered appropriate to conduct research that would address specific questions related to the extent of mental health issues in schools, and would identify procedures that might support the development of appropriate procedures for mental health management. Funding was provided by the National Association of Independent Schools and Non-Maintained Special Schools (NASS) to conduct research with the following aims: 1. to examine mental health issues in children and young people with special educational needs, including rates of incidence, existing levels and types of support provided from within schools, availability of support from external agencies, and working practices; 2. to collate research evidence to inform further development of support procedures and to enable the future development of resources for schools, which will both inform and assist in the delivery of support for pupils. Research was conducted using survey methods (a postal questionnaire and interviews) in residential special schools across England. Questionnaires were sent to 124 schools, through which staff were asked about the extent of mental health issues among pupils in attendance at their schools. This instrument sought both quantitative data indicating the extent of mental health needs and qualitative data related to understanding, provision and response and allocation of responsibilities within schools. In addition, it sought data related to staff confidence and professional knowledge in relation to mental health issues. The questionnaire also sought information about access to service provision from outside agencies, and the procedures and interventions for addressing mental health needs managed from within the schools. Replies were received from 48 schools (a return of 38%) and, following concept coding and analysis of the findings, a semi-structured interview schedule was devised and deployed with teachers and professionals in a sample of the respondent schools. A total of 43 face-to-face interviews were conducted with individual teachers and other professionals, including therapists, psychologists and care staff in schools providing for a broad range of special educational needs across the country. These interviews provided an opportunity both to verify data obtained from questionnaires and to gather more specific examples of practice and the challenges confronting schools. The findings from the research identified a number of key themes, which indicate that concerns about pupils emotional well-being and mental health and its management in special schools are fully justified. Indeed, the evidence suggests that the prevalence of mental health concerns in the sample schools is a source of considerable stress for staff, who often feel inadequately prepared or supported in dealing with mental health issues. While this article is focused on a specific issue that emerged from the research that is, the lack of clarity in the relationship between mental health and diagnosed needs it is important to contextualise the discussion that follows by making some mention of other factors. Responses to the questionnaire and interviews indicate that while students are placed in residential special schools ostensibly to address their special educational needs, many experience mental health difficulties which are at a level that causes concern. A particular anxiety expressed by interviewed staff concerned the lack of available resources, or a lack of consistent deployment of resources in assisting schools to address student needs. The research identified considerable variations in both the availability of services such as Child and Adolescent Mental Health Services (CAMHS) or psychiatric counselling and the level of intervention that these services provide. Many schools report that services appear over-stretched and unable to offer the level of support required. There was a general acknowledgement that these services operate under considerable pressure, and that while they are often willing to respond to calls for assistance, they are unable to afford the level of support that schools feel is necessary. One interviewee said: Mental health services are short within the NHS, I think when a child is showing anxiety, depression, a drastic change in behaviour, behaviours we can t cope with, that are beyond sort of what we can cope with, that is a problem. The genuinely scary moments. It does seem quite a battle for services sometimes. (healthcare manager of a school for pupils with severe learning difficulties (SLD)/PMLD/ASD) Concerns were also expressed that professionals working in mental health services, while highly professional and knowledgeable about mental health, often had a limited understanding of the needs of specific groups of students. Those with complex needs, who form the majority population in residential special schools, were often outside the direct experience of professionals from support agencies. This was perceived to cause difficulties in terms of accurate diagnosis, 4 British Journal of Special Education Volume 36 Number The Author(s). Journal compilation 2009 NASEN

3 communication with students and appreciation of the approaches necessary for management of their needs. The general impression was that services are willing to provide support and are sympathetic to the needs of schools, but professionally ill-prepared for working with the special school student population. The lack of availability of appropriate specialist support is exacerbated by the inadequacy of the current levels of understanding of mental health and its management among school staff. Data from the research indicate that few staff in the residential special schools had received training specifically related to the identification or management of students mental health needs. This was seen by school staff as an area of considerable concern and is an issue for professionals working in a range of posts within the schools. A care manager explained: When I was doing my learning disability nurse training it briefly covered some mental health, but probably only about two days worth and you have got to consider that that is going back twenty years. (care manager of a school for pupils with SLD/PMLD) While some staff acknowledged that specific matters relating to emotional well-being were occasionally addressed within other training opportunities, notably those focusing on behaviour, the majority of study participants indicated that they felt inadequately prepared to deal with many of the situations that they face on a regular basis. The anxieties expressed by staff in special schools participating in this research are clearly an area for concern. We would contend that while we encountered teachers and other professional colleagues who are highly committed to addressing the mental health needs of their students, they are currently frustrated in their efforts by a set of circumstances that are largely beyond their control. There is clearly a need to give attention to matters of training and the provision of expert support and resources. However, at the heart of the challenges faced by teachers is a fundamental issue of definition of mental health and the problems sometimes experienced by students, and the relationship of this issue to those characteristics often associated with specific special educational needs. Exploring the relationship between mental health and special educational needs The complexity of the relationship between individual needs, specific disorders and mental health problems was a recurring theme among school staff. In particular, staff expressed major concerns regarding distinctions between acknowledged features of disorders such as ASD or AD/HD, or the interpretations of responses from those pupils with PMLD, and the identification of indicators that suggest a pupil has, or is developing, a mental health problem. As one interviewee put it: I do wonder sometimes about the mental health of the students here. When you think of their level of disability, how impaired they are, how difficult it is for them to communicate...i think that it is almost that there is an assumption that they are PMLD therefore it [mental health] is all part of the same package. (residential care worker) The difficulties of identifying mental health problems among pupils with complex needs were frequently referred to as problematic, because the boundaries between the characteristics of diagnosed conditions and possible mental health issues are often unclear. In pupils with PMLD, the difficulties lie with us in interpreting their non-standard ways of communicating (Fergusson & Lacey, 2007), or where, for example, changes in behaviours may well be wrongly attributed (Fergusson & Lacey, 2007; Sheehy & Nind, 2005; Davies, 2004; Carpenter, 2004). In addition, staff described key differences in social interaction, communication and flexibility in thinking and behaviour associated with pupils with ASD, and reflected in the triad of impairments (Wing & Gould, 1979). They also described the consequent differences in individual pupils behaviour which may also be wrongly attributed to ASD, thus masking any mental health problem. Similarly high levels of anxiety and depression are frequently reported in pupils with AD/HD (Cooper, 2001; Rowland, Lesesne & Abramowitz, 2002; Stein, Pat-Horenczyk, Blank, Dagan, Barak & Gumpel, 2002; Baxter & Rattan, 2004). While an understanding of the features of specific needs such as PMLD, ASD or AD/HD was clear in the staff interviewed for this research, understanding of mental health problems was less so. This confusion seems to be shared by others. For example, Helps, Newsom-Davis and Callias (1999) report on teachers perceptions of autism and conclude that many teachers see autism as an emotional disorder, suggesting that this might reflect teaching staff s uncertainty about what an emotional disorder is in terms of the classification systems that mental health professionals might use. Importantly, it is acknowledged that the boundaries between ASDs and mental health disorders are often unclear: The cardinal features of autism and Asperger syndrome make the assessment and diagnosis of depression within these disorders particularly difficult. There is considerable overlap between the symptoms of autism and Asperger syndrome and those of depression, and the characteristics of autism and Asperger syndrome may affect the expression of depressive symptoms. (Stewart, Barnard, Pearson, Hasan & O Brien, 2006, pp ) Kim, Szatmari, Bryson, Streiner and Wilson (2000) likewise indicate the difficulties of identifying anxiety and mood symptoms as distinctive from features of ASDs, especially when the individual has limited verbal skills or where there is symptom overlap, such as repetitive questioning. This issue is also discussed by Bussing, Zima, Perwien, Belin and Widawski (1998), who suggest that for pupils with AD/HD access to mental health services is sometimes denied 2009 The Author(s). Journal compilation 2009 NASEN British Journal of Special Education Volume 36 Number

4 because of an acceptance of those characteristics, such as anxiety, as being an inherent and therefore accepted feature of such pupils. This is a key issue, reflected in both the literature and in this research study, as there is some indication that people with complex needs are at greater risk of developing mental health problems and psychiatric disorders than other groups (Fergusson & Lacey, 2007; Sheehy & Nind, 2005; Attwood, 2003; Mount, Lister & Bennun, 2004; Davies, 2004; Bradley, Summers, Wood & Bryson, 2004; Currie & Stabile, 2006; Morgan, Roy & Chance, 2003; Gillberg, 1999; Howlin, 2000). In particular, some studies indicate a high occurrence of depression and anxiety among people with autism and Asperger syndrome (Howlin, 1997; Kim et al., 2000; Stewart et al., 2006). In addition, co-occurrence of ASD with other disorders such as AD/HD is not uncommon, in particular obsessive compulsive disorders (OCD), which Reaven and Hepburn (2003) suggest also co-occurs with AD/HD and Tourette s syndrome. They also suggest that: Diagnosing OCD in children or adolescents with an autistic spectrum disorder is particularly challenging because of the difficulty teasing apart the stereotyped and rigid behaviours from the presence of clear obsessions and compulsions. (Reaven & Hepburn, 2003, p. 146) Interviews with staff indicated a particular concern in relation to the boundaries between, and overlaps with, individual differences resulting from a range of complex needs. For example: How do you unpick what is PMLD, what is normal type behaviour for that age group and your mental health. (care team leader)...itis(a)very fine line between when it goes into mental health issues...well you couldn t actually say, is it a mental health issue or is it the autism, but I think they sort of intertwine there. (teacher) While recognising the problems inherent when a mental health problem co-occurs with a number of diagnosed conditions, nevertheless it would appear that there is some agreement as to what might indicate that an individual with a diagnosed condition also has a mental health problem or need. Kim et al. (2000) suggest that it is important to carefully assess changes in behaviour (i.e. disturbances in sleep, changes in appetite and energy level) and obtain as much qualitative information as possible. Moreover, Stewart et al. (2006) suggest that third parties are most likely to report concerns (as opposed to selfreport), and that these third-party accounts are based upon sad or miserable facial appearance, or on changes in behaviour such as increased frequency of crying or increased irritability. This was clearly reflected in many of the responses from staff when questioned about indicators of mental health problems: If we see a sudden significant dip in behaviour...behaviours that are not the norm for this individual, not typical for them, that are really uncharacteristic. (psychologist) there are lots of seemingly odd behaviours that some on the autistic spectrum and some with ADHD might display...unless it is something that is a bit above and beyond, that is when you start thinking...youcan almost sense when things are tipping over into something that is becoming much more of a concern... it may be increasing violence, behaviour that is not part of their normal pattern of behaviour... (teacher) Changes in behaviour may result in the onset of depressive symptoms (for example, Kim et al., 2000; Long, Wood & Holmes, 2000), and might include increased aggressive, oppositional, maladaptive and self-injurious behaviours. This would indicate that the focus upon changes in behaviour, reported widely by staff is a valid one. I think there are various triggers, some children will be able to tell you and with others you would see a complete change in behaviour, it may be depression, it may be aggression... (headteacher of school) The implications of changes in behaviour that may arise due to mental health problems are not insignificant. Kim et al. (2000), in their study focusing upon mood problems and anxiety in children with high-functioning autism and Asperger syndrome, report as follows:... these psychiatric problems had an important impact on the parents and children s lives. For example, those children with anxiety and mood problems were more aggressive, limited their parents social activities and had poorer relationships with teachers, peers and family members. (p. 128) This does not apply only to those pupils on the autistic spectrum, as these interviewees comments indicated:... sometimes the parents would like more medication because it is more difficult for them to manage at home, they haven t got that big set up and support system like wehave...itisgoing to be quite tricky for the parents. (teacher, head of department)... there have been severe problems with him at home over the Easter holidays with aggression and she [mother] has been in contact with social services. (teacher) 6 British Journal of Special Education Volume 36 Number The Author(s). Journal compilation 2009 NASEN

5 School staff who see students on a regular basis are often best placed to detect such changes in mood or behaviour, and it is important that these, no matter how apparently insignificant at the time, are noted in order to detect patterns or indicators which may be essential for the effective management of well-being. Planning a way forward The research reported in this article makes clear the level of confusion that surrounds issues of special educational needs and mental health. It is apparent that many teachers and other professionals who work with learners with complex needs feel ill-prepared accurately to identify or address the mental health needs of this population. However, it seems equally likely that until greater clarification of the relationship between special educational needs and mental health is achieved, it will not be possible to provide supportive systems for teachers, their students or students parents/ carers. Indeed, it appears probable that until guidance is provided on supporting the mental health needs of specific populations within schools, the management of these pupils will remain inadequate. Further research focused upon the relationship between mental health and specific special educational needs is desirable, and the provision of models of effective assessment and intervention is essential if teachers and other colleagues are to feel supported in this area. The provision of further professional development in the area of mental health for all professionals working with pupils with complex needs should be seen as a priority. This is likely to be achieved only through the co-ordination of services and agencies, which ensures that those professionals with expertise in the management of mental health work more closely with teachers who are experienced in teaching pupils with complex needs. The sharing of experiences and expertise across disciplines and agencies is likely to be critical in both furthering understanding of the issues and ensuring the development of appropriate training packages. Similarly, the provision of curriculum materials that are accessible to pupils with special educational needs, and that address mental health and well-being issues in a positive manner, should be a focus for the immediate future. It is clear that teachers and others working in schools are conscious of the difficulties associated with mental health that many of their pupils face. They are keen to move forward in addressing these, but are frustrated by the lack of clarity with regard to good practice in the identification and management of mental health issues. The willingness of professionals to move forward and address the challenges is evident from the findings of this research, and, with support, provides an opportunity for actions that will benefit both pupils and staff. 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6 the Mental Health of Young People with Learning Disabilities. London: Mental Health Foundation. Fujiura, G. & Yamaki, K. (2000) Trends in demography of childhood poverty and disability, Exceptional Children, 66 (2), Gillberg, C. (1999) Autism and its spectrum disorders, in N. Bouras (ed.) Psychiatric and Behavioural Disorders in Developmental Disabilities and Mental Retardation. New York: Cambridge University Press. Helps, S., Newsom-Davis, I. & Callias, M. (1999) Autism: the teacher s view, Autism: International Journal of Research and Practice, 3 (3), Holland, A. (1999) Psychiatry and mental retardation, International Review of Psychiatry, 11, Howlin, P. (1997) Psychiatric disturbances in adulthood, in P. Howlin (ed.) Autism: preparing for adulthood. London: Routledge. Howlin, P. (2000) Outcome in adult life for more able individuals with autism or Asperger syndrome, Autism: International Journal of Research and Practice, 4 (1), Kim, J. A., Szatmari, P., Bryson, S. E., Streiner, D. L. & Wilson, F. J. (2000) The prevalence of anxiety and mood problems among children with autism and Asperger syndrome, Autism: International Journal of Research and Practice, 4 (1), Koskentausta, T., Livanainen, M & Almqvist, F. (2007) Risk factors for psychiatric disturbance in children with intellectual disability, Journal of Intellectual Disability Research, 51 (1), Linna, S., Moilanen, I., Ebeling, H., Piha, J., Kumpulainen, K., Tamminen, T. & Almqvist, F. (1999) Psychiatric symptoms in children with intellectual disability, European Child and Adolescent Psychiatry, 8 (8), Long, K., Wood, H. & Holmes, N. (2000) Presentation, assessment and treatment of depression in a young woman with learning disability and autism, British Journal of Learning Disabilities, 28, Morgan, C. N., Roy, M. & Chance, P. (2003) Psychiatric co-morbidity and medication use in autism: a community survey, Psychiatric Bulletin, 27, Morgan, H. (2007) Mental Health and Children and Young People with Complex Needs a policy briefing [online at Accessed 22 November Mount, M., Lister, A. & Bennun, L. (2004) Identifying mental health needs of looked after children, Clinical Child Psychology and Psychiatry, 9 (3), NASS (National Association of Independent Schools and Non-Maintained Special Schools) (2007) Making Sense of Mental Health: the emotional wellbeing of children and young people with complex needs in schools. Research Report. Northampton: The University of Northampton [online at pages/documents/makingsenseofmentalhealth.doc]. Accessed 17 November Reaven, J. & Hepburn, S. (2003) Cognitive-behavioural treatment of obsessive compulsive disorder in a child with Asperger syndrome: a case report, Autism: International Journal of Research and Practice, 7 (2), Reiss, S. (1993) Assessment of psychopathology in persons with mental retardation, in J. Matson and R. Barrett (eds) Psychopathology in the Mentally Retarded. Boston: Allyn and Bacon. Rowland, A., Lesesne, C. & Abramowitz, A. (2002) The epidemiology of attention-deficit/hyperactivity disorder (ADHD): a public health view, Mental Retardation and Developmental Disabilities Review, 8 (3), Sheehy, K. & Nind, M. (2005) Emotional well-being for all: mental health and people with profound and multiple learning disabilities, British Journal of Learning Disabilities, 33, Smyth, M. & Robus, N. (1989) OPCS Survey of Disability in Great Britain: report 5 the financial circumstances of disabled children living in private households. London: HMSO. Stein, D., Pat-Horenczyk, R., Blank, S., Dagan, Y., Barak, Y. & Gumpel, T. P. (2002) Sleep disturbances in adolescents with symptoms of attention-deficit/ hyperactivity disorder, Journal of Learning Disabilities, 35 (3), Stewart, M. E., Barnard, L., Pearson, J., Hasan, R. & O Brien, G. (2006) Presentation of depression in autism and Asperger syndrome: a review, Autism: International Journal of Research and Practice, 10 (1), Wing, L. & Gould, J. (1979) Severe impairments of social interaction and associated abnormalities in children: epidemiology and classification, Journal of Autism and Childhood Schizophrenia, 9, Address for correspondence: Richard Rose Centre for Special Needs Education and Research University of Northampton Park Campus Boughton Green Road Northampton NN2 7AL Richard.Rose@northampton.ac.uk Article submitted: December 2007 Accepted for publication: September British Journal of Special Education Volume 36 Number The Author(s). Journal compilation 2009 NASEN

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