Lifespan of Children with Developmental Communication Impairments: Adult Outcomes, Life Experiences and Implications for Service Provision

Transcription

1 Lifespan of Children with Developmental Communication Impairments: Adult Outcomes, Life Experiences and Implications for Service Provision Judy Clegg, PhD Human Communication Sciences, University of Sheffield, UK Royal Auris Group Symposium, November 2012

2 2 Today Longer term outcomes of children with developmental communication impairments (DCI) Past and current research Challenges of research in this area Implications for service provision

3 3 Longer Term Outcomes of Children with Developmental Communication Impairments (DCI)

4 4 Who are we talking about? Video Material of Adults with Developmental Communication Impairments

5 5 Past and Current research Past Research

6 6 THE MAUDSLEY NOTTINGHAM LANGUAGE DEVELOPMENT STUDY University of Nottingham Institute of Psychiatry Dr Judy Clegg Professor Chris Hollis Professor Sir Michael Rutter Professor Dennis Cantwell Dr Lynn Mawhood Professor Pat Howlin

7 INITIAL RECRUITMENT IN BOYS CURRENT AND SEVERE DISORDER OF LANGUAGE COMPREHENSION CLINICS AND SPECIAL UNITS IN THE UK AUTISTIC N = 19 RUTTER S SYNDROME OF INFANTILE AUTISM DLD N = 23 DLD LANGUAGE DISORDER MIXED N = 5 AUTISTIC FEATURES DID NOT MEET CRITERIA

8 8 28 YEAR FOLLOW UP OF MALES WITH DEVELOPMENTAL LANGUAGE DISORDER Childhood Early 20s Mid 30s Baseline 1 st Follow-up 2 nd Follow-up 3 rd Follow-up 1972/ /89 (1997-9) N = 23 N = 15 N = 20 N = 17 mean age 9;11 yrs mean age 13;04 yrs mean age 24; 3 yrs mean age 36;02 yrs

9 9 PARTICIPANTS DLD COHORT N = 17 MALES MEAN AGE AT ASSESSMENT 36 years 2 months (S.D. 1.25) CHARACTERISTICS Initial diagnosis of DLD at mean age of 8 years and 2 months Performance intelligence of >70 at 8 years and 2 months Absence of medical or neurological disorder and hearing loss SIBLINGS N = 10 MALES N = 6 FEMALES 36 years 10 months (S.D. 6.04) Comparison group matched for family background Non language disordered No history of medical or neurological disorders IQ MATCH GROUP N = 17 MALES 36 years 8 months (S.D. 2.2) Comparison group Non language disordered No history of medical or neurological disorders Matched to the DLD cohort on age, gender and performance IQ NATIONAL CHILD DEVELOPMENT STUDY N = 1155 MALES Initial information taken at 11 years and outcome information taken at 33 years General population comparison group Matched to DLD cohort on childhood performance IQ and social class Controlling for childhood performance IQ and social class on social adaptation analysis only

10 10 ASSESSMENT DOMAIN SPECIFIC DOMAIN ASSESSMENTS USED AT TIME 4 (MID THIRTIES) COGNITIVE PROFILE Intelligence Short form of the WAIS-R (Wechsler 1992) Literacy Wechsler Objective Reading Dimensions (Wechsler 1993) Expressive Language Expressive One-word Picture Vocabulary test (EPVT) (Gardner 1979) Receptive Language British Picture Vocabulary Scales (BPVS) (Dunn et al 1982) Syntactic and semantic understanding Oral Comprehension Test (Mawhood 1995) based on the Neale Reading Test (1958) Social cognition The Eyes Task (Baron-Cohen et al 1997) Strange stories (Happé 1994) Awkward Moments computer task (Phillips and Newman 1994) Visual and verbal memory Working memory Phonological processing SOCIAL ADAPTATION Social/Emotional and Occupational functioning Doors & People (Baddeley, Emslie and Nimmo-Smith 1994) Sentence repetition form A from the Multi-lingual aphasia examination (Benton & des Hamsher 1989) Adult test of nonword repetition (Gathercole & Baddeley 1997) Social/Emotional and Occupational functioning Interview subject and informant based SEF-S & I) PSYCIATRIC FUNCTIONING Adult psychopathology Malaise Inventory (Rutter, Tizzard & Whitmore 1970) Schizotypal Personality Questionnaire (SPQ) (Raine 1991) Australian Psychosis Screen modified on the Psychosis Screening Questionnaire (Bebbington & Nayani 1995) Schedule for schizophrenia and affective disorders lifetime version (SADS-L) (Endicott & Spitzer 1978)

11 11

12 12 IQ score DLD cohort - verbal and performance IQ from childhood into adult life Time 1, 9 yrs 11 mnths Time 2, 13 yrs 4 mnths Time 3, 24 yrs 3 mnths Time 4, 36 yrs 2 mnths VIQ PIQ

13 13 Age equivalent score Receptive and expressive language of DLD cohort from childhood into adult life Time 1, 9 yrs 11 mnths Time 2, 13 yrs 4 mnths Time 3, 24 yrs 3 mnths Time 4, 36 yrs 2 mnths Comprehension Expression

14 Literacy age equivalent scores across the DLD adults, siblings and IQ matched controls 14

15 Social adaptation of the DLD adults, siblings and NCDS cohort 15

16 16 Psychopathology 23.5% of the DLD adults presented with mental health problems - 2 DLD Adults Schizophrenia - 1 DLD ADULT Personality disorder - 1 DLD ADULT Major depression 13.5% NCDS COHORT ever seen GP for emotional problems No Psychopathology identified in the siblings

17 Case 1 IQ, 37 years DLD and Psychopathology 17 Cognitive domain Time 1 Time 2 Time 3 Time 4 8:05 9:05 24:00 37:00 Performance IQ Verbal IQ Language comprehension (age equivalent) Literacy (age equivalent) Social cognition (composite score) Verbal working memory (composite score) 5:11 >6 yrs 10;02 11: :10 10: Left school for children with learning difficulties at 16 years. Worked as a kitchen hand for 2 years, breakdown at 19 years, diagnosed with schizophrenia at 19 years. Since then 2 relapses with lengthy hospital admissions, Not worked since.

18 18 Summary and Conclusions DLD is a pervasive lifelong impairment DLD has a complex cognitive profile Language deficits in DLD reach a plateau in adolescence with no final resolution DLD is a risk factor for impaired social adaptation DLD is associated with psychiatric disorder in later adolescence and adult life Clegg, J., (2005). Developmental language disorders a follow up in later adult life. Cognitive, language and psychosocial outcomes. Journal of Child Psychology & Psychiatry, 46, 2,

19 19 Longer term outcomes of children with DCI Children with autism and ASD (e.g., Howlin et al., Mawhood et al., Rutter et al., ) Children with Specific Language Impairment and other developmental communication difficulties (e.g., Conti-Ramsden et al., Dockrell and colleagues) Follow up points include later childhood, adolescence, young adult life and a few in later adult life Large population cohort studies (e.g., Schoon, Law and colleagues) Methodologically and ethically challenging

20 20 Current Research

21 21 Psychosocial outcomes What is a good outcome? What is a poor outcome? Are outcomes different to life experiences? How are outcomes and life experiences measured? Education level Independent living Health including mental health Employment Much less on how life experiences are reported

22 22 Why document life experiences?

23 23 The Questions 1. What are the adult pyschosocial outcomes of children who attended a specialist residential school for children with pervasive and complex DCI? 2. How do these adult ex-pupils perceive their experiences from childhood into adult life? 3. How do the parents of the adult ex-pupils perceive their experiences of having a child with pervasive and complex DCI? 4. Is there agreement between the perspectives of the adult ex-pupils and those of their parents?

24 24 The Study A retrospective and opportunistic retrospective follow up study of children who attended a specialist residential school for children with severe and complex developmental communication impairments 17 adults who were between 18 to 35 years of age when followed up 9 parents of the adults Semi-structured interview modified from previous follow up studies of adults with autism and ASD (Howlin et al., Clegg et al.,). Adults and their parents interviewed separately Methodological challenges and ethical considerations

25 25 School archive files

26 26 Located in.

27 27 Ex-pupil Age on entry Age on leaving Age at follow up Residential Medical Issues Diagnostic label on entry 7 Male 13;00 17;07 18;04 No None Receptive language impairment & social communication difficulties with characteristics of ASD 8 Male Parent 9 Female Parent 10 Female Parent 11 Female Parent 12;02 19;00 19;07 Fortnightly None Severe dyspraxia affecting motor control & articulation 6;05 12;06 38;02 Weekly None Developmental expressive aphasia 7;05 16;03 26;09 Fortnightly None Receptive & expressive language difficulties 11;11 16;09 26;03 Fortnightly None Semantic Pragmatic language disorder

28 28 A thought on the analysis of qualitative data There is a theory and a science to qualitative methodology Levels of integrity from grounded theory to thematic analysis to framework analysis Large amounts of qualitative data are challenging to analyse and time intensive Justification for using thematic analysis

29 29 Seven key themes 1. The lack of specialist support and the impact of this in early childhood 2. The benefits of specialist educational provision compared to mainstream provision 3. The changing nature of developmental communication impairments over time 4. The challenging transition from leaving specialist educational provision to returning to the family home 5. The persisting impact on family life 6. The absence of appropriate support in young and older adult life 7. The differences in perspectives between the adults and their parents

30 30 Theme 1: The lack of specialist support and the impact of this in early childhood Parent: she couldn t speak one word when she started (mainstream) school Parent: was the most bizarre erratic child we couldn t go to playgroups or anything like that

31 31 Theme 2: The benefits of specialist educational provision compared to mainstream provision Ex-pupil : staff understood what a pupil was trying to express Ex-pupil : staff made sure pupils understood a topic in the class before moving on Parent: the first day he actually started full time he came home and he d had the most lovely day of his entire life and he said I love it there I m just like everyone else which upset me because I didn t realise that he knew he wasn t like everybody else

32 32 Theme 3: The changing nature of developmental communication impairments over time Ex-pupil : I ve got autism, I don t really know much about it but it s like your brain thinks differently to other people Ex-pupils: having tests and assessments ; feeling different ; difficulties with confidence and shyness ; crying and having tantrums ; reading difficulties

33 33 Theme 3: The changing nature of developmental communication impairments over time Parent: If he is writing a report and he can t think how to spell a big word he can think of how to choose a smaller word you find ways round it don t you Parent: People make assumptions that you know a certain amount so they only need to tell you a little bit, well sometimes with Grace it s the whole lot

34 34 Theme 4: The challenging transition from leaving specialist educational provision to returning to the family home (ex-pupils) Generally perceived themselves as well prepared for adult life some exceptions Ex-pupils: boarding restricted access to learning about life skills in the family environment and the environment was too protective and sheltered Ex-pupil: I didn t know how to live at home and it was all new again

35 35 Theme 5: The persisting impact on family life Parent: If you were as a group of young mums with your children playing together it was a little bit hard because you know that it isn t your child that s being naughty..they can t help it Parent: when Nigel came home we used to plan all sorts of treats and it took me months to realise that all he actually wanted was to be at home he wanted to have his cat with him he wanted to go in his bedroom by himself

36 36 Theme 5: The persisting impact on family life Parent: we wouldn t say to a child in a wheelchair right come on get up..but with these children they do that every day because it s not obvious Parent: its been hard it s all on us now Parent: and you know we ve got to prepare Karen for that because we re not going to be around forever she s going to have to make that move really

37 37 Theme 6: The absence of appropriate support in young and older adult life Parent: they thought she was more able than she is Parent: we ve approached several organisations and they all give us reasons for not being able to support Dennis

38 38 Theme 7: The differences in perspectives between the adults and their parents All parents reported their grown up children had persisting communication difficulties but this was not reported by the individuals themselves Parents reported more issues around independent living and managing finances than the individuals did Parents reported employment related concerns but the ex-pupils were very happy with their employment Parents much more concerned about the quality of the friendships/relationships reported and levels of social isolation. Several parents did not rate their children as having any friendships/relationships

39 39 Summary and conclusions Perceptions of the adults and their families are extremely informative The perceived benefits of early intervention, parental support, specialist educational provision and guidance at times of transitions are very relevant for current service provision Outcomes and experiences are context bound More positive objective outcomes (e.g., in employment) than the literature predicts Clegg, J., Ansorge, L., Stackhouse, J. & Donlan, C. (2012). Developmental communication impairments in adults: outcomes and life experiences of adults and their parents. Language, Speech and Hearing Services in Schools, 43, 521, 535.

40 40 Challenges of research in this area

41 41

42 42 Implications for service provision

43 43 Screenshot here

44 44 Any Questions?

45 45 Supported by: Knowledge Transfer Fund, University of Sheffield ESRC Case PhD Studentship, ESRC

46 46 References Clegg, J., Ansorge, L., Stackhouse, J. & Donlan, C. (2012). Developmental communication impairments in adults: outcomes and life experiences of adults and their parents. Language, Speech and Hearing Services in Schools, 43, 521, 535. Clegg, J., (2005). Developmental language disorders a follow up in later adult life. Cognitive, language and psychosocial outcomes. Journal of Child Psychology & Psychiatry, 46, 2, Clegg, J., & Henderson, J. (2006). Changing economic costs from childhood into adult life. Mental Health Research Review, Clegg, J. Childhood speech and language difficulties and later life chances. Clegg, J. & Ginsborg, J. (2006). (eds). Language and social disadvantage: theory into practice. Wiley-Blackwell, UK.