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P A T O S S 2008 Newport

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P A T O S S 2008 Newport

  1. 1. Managing the whole child in the classroom - a rationale and practical guidance (with additional data on provision at 16+ & 18+) Professor Amanda Kirby Dyscovery Centre University of Wales, Newport
  2. 2. Key points aiming to be covered. <ul><li>Developmental disorders are not discrete but part of a spectrum </li></ul><ul><li>Segmented training on specific learning difficulties can lead to confusion and delays in referral as parents traverse a system </li></ul><ul><li>Need for a common language and pathway </li></ul><ul><li>Whole school training especially in secondary schools about approaches not diagnoses </li></ul><ul><li>Need to train those working with children with </li></ul><ul><li>“ behaviour” issues to check out what else MAY be going on. </li></ul><ul><li>6. At risk kids should be automatically screened for SPLDs’ </li></ul><ul><li>7. Post 16 education needs to have a more social or medical model// diagnosis or support? </li></ul>
  3. 3. How do we see children today?
  4. 4. <ul><li>&quot;The children now love luxury; they have bad manners, contempt for authority; they show disrespect for elders and love chatter in place of exercise. Children are now tyrants… They contradict their parents, chatter before company, and tyrannize their teachers”. </li></ul>&quot;The trouble with youngsters today...&quot;
  5. 5. <ul><li>Socrates 470-399 BC </li></ul>&quot;The trouble with youngsters today...&quot;
  6. 6. Young people may present in different ways
  7. 7. What do YOU see? <ul><li>Too loud </li></ul><ul><li>Answering out of turn </li></ul><ul><li>Inappropriate comments </li></ul><ul><li>Seemingly not listening </li></ul><ul><li>Not following instructions </li></ul><ul><li>Annoying others </li></ul><ul><li>Fidgety </li></ul><ul><li>Fiddling with mobile phone </li></ul><ul><li>Talking to mates </li></ul><ul><li>Doodling </li></ul><ul><li>Attacking others verbally or physically </li></ul><ul><li>Anti- social behaviour- not recognising the rules </li></ul>
  8. 8. ADHD Dyslexia Asperger's Syndrome DCD ODD Conduct disorder Specific language impairment Pragmatic language impairment Dyspraxia
  9. 9. Autism friendly schools Dyslexia friendly schools Lots of initiatives………………
  10. 10. Fixed thinking
  11. 11. Behaviour SEN SERVICES
  12. 12. Children
  13. 14. How often do we see a “pure” child with ONLY one difficulty ? The rule…. …… Or the exception
  14. 15. Start from any point and you will end up seeing overlap
  15. 16. Language + behaviour <ul><li>Approximately 75% of children with identified emotional and behavioural difficulties have significant language deficits. </li></ul><ul><li>The prevalence of language deficits in children who exhibit anti-social behaviours is 10 times higher than in the general population. </li></ul>
  16. 17. Facts <ul><li> Summary by the Centre for Integrated Healthcare Research, 2006 </li></ul><ul><li>EBD children with unsuspected receptive disorders were rated the most delinquent , the most depressed (by parents) and aggressive (by teachers) and had more severe challenging behaviour. </li></ul><ul><li>Children with expressive language disorders were rated as more socially withdrawn and anxious. </li></ul>
  17. 18. And more……. <ul><li>10% Young offenders significant SLCI (Hamilton, 1999, Bryan 2004) </li></ul><ul><li>Early language difficulties are a predictor of later difficulties- e.g. mental health problems ( Clegg,1999) </li></ul><ul><li>50% of children with speech and language difficulties have associated emotional and behavioural difficulties ( Beitchman et al, 1990) </li></ul>
  18. 19. ADHD and ASD <ul><li>21% of children with severe ADHD met full criteria for Asperger’s syndrome and 36% showed ‘autistic traits’ (Fitzgerald and Corvin, 2001) </li></ul>
  19. 20. Dyslexia AND <ul><li>Speech and language difficulties is linked to poorer literacy skills (Snowling) </li></ul><ul><li>Early years with SLI… 60% had associated DCD ( Missiuna and Gaines , 2007) </li></ul>
  20. 21. SLI and DCD <ul><li>Early years with SLI… 60% had associated DCD ( Missiuna and Gaines , 2007) </li></ul><ul><li>SLI and DCD -Hill et al </li></ul>
  21. 22. Take 50 children with Dyspraxia (DCD)
  22. 23. ADHD AND Oppositional Defiant Disorder 40% Tics 11% Conduct Disorder 14% ADHD alone 31% Anxiety Disorder 34% MTA Cooperative Group. Arch Gen Psychiatry 1999; 56:1088–1096 Mood disorders
  23. 24. ADHD + DCD Impact of combination
  24. 25. 2 sets of data both from clinical settings <ul><li>Children with DCD- meeting criteria (<5% on M-ABC Battery, and fulfil criteria for DSM1V) </li></ul><ul><li>Children with ADHD- meeting criteria for ADHD on DSM1V(mostly combined subtype). </li></ul><ul><li>To consider social and emotional impact: </li></ul><ul><li>All parents completed </li></ul><ul><li>Strengths and Difficulties Questionnaire (SDQ) </li></ul><ul><li>Autism Spectrum Screening Questionnaire (ASSQ) </li></ul>
  25. 26. DCD sample ADHD sample N=30 40% combined N=58 34% combined
  26. 27. * Significant difference with DCD alone- compared to all other groups on total difficulties, conduct, and hyperactivity ( p<0.01) * * * *
  27. 28. Start from a different point Behaviour…predicting the future
  28. 30. Is the diagnosis you get… <ul><li>Dependent on the door you go through </li></ul>
  29. 31. We sometimes see behaviour and don’t look what’s beneath it Frustrated Angry Withdrawn Fidgety
  30. 32. “ Kieran” <ul><li>School report (aged nearly 8 yrs) </li></ul><ul><li>“ Below average in English, Maths & Science. Not achieving full potential, difficulty staying on task, rarely finishes work, frequently disturbs others, no general organisational skills, does not co-operate with peers, limited attention span, impulsive behaviour both within the class and playground. Behaviour of concern since nursery years. On School Action Plus” </li></ul>
  31. 33. “ Kieran” <ul><li>Educational psychology assessment (aged 8 ½ years) </li></ul><ul><li>School concerns identified as before. In addition problems identified: with </li></ul><ul><li>Social interaction- speaks inappropriately to teachers and involved in disagreements with peers in the yard, </li></ul><ul><li>Co-ordination - poor ball skills, untidy handwriting, difficulty holding knife and fork, </li></ul><ul><li>Literacy and numeracy -delayed basic attainments but “school have not noticed any dyslexic tendency” </li></ul><ul><li>Advice given re-strategies to use in the school </li></ul>
  32. 34. Parents Confused
  33. 35. Keiran 3y 7m, HV 18m, P 4y, P 4y, SLT 4y, EP 4y, OT 4y, OT 4y, SEN 5y, SLT 5y, OT 6y, GP 6y, EP 6y, EP 7y, P 7y, Physio 7y, SLT 7y, CP 7y, OT 7y SLT 8y, SLT 8y, SLT 8y, SLT 8y, EP 8y, OT 8y, OT 9y, SLT (Feeding) 9y, Physio 9y, EP 10y, OT 10y, OT 10y, EP 8y, SEN Tribunal Education HEALTH
  34. 36. There is a need for a common pathway
  35. 37. Children do not live in a vacuum <ul><li>Ecological approaches ( Bronfenbrenner) </li></ul><ul><li>&quot;life is process, not substance&quot; Weiss 1993 </li></ul>CHILD
  37. 40. Context is key Playing football in the UK Reading in the jungle
  38. 41. A child is not an island and is affected by…… <ul><li>Their environment </li></ul><ul><li>The tasks they are being asked to do </li></ul><ul><li>Their experiences before coming into school including their social setting </li></ul>
  39. 42. Is our system unfair? <ul><li>Reward those diagnosed with support </li></ul><ul><li>What if the child is unaware, or others </li></ul>
  40. 43. What is a diagnosis of SpLD <ul><li>Undertaken using a test or from taking a “ history” from others </li></ul>5% 15 %
  42. 45. Where are YOU on the curve? (trait) <ul><li>Make some spelling errors, need to re-read words on the page, take longer than others to retain information </li></ul><ul><li>Slower learning a new skill, difficulty with right and left, a bit clumsy, took longer than others to learn to drive </li></ul><ul><li>Find it hard to sit still, prefer to flit from one thing to another, see the big picture but not so good at the detail </li></ul><ul><li>Prefer detail, not so good at the big picture, uncomfortable in large social groups, don’t always get the jokes, take things literally </li></ul>
  43. 46. A common clinical pathway in line with Special Educational Needs Code of Practice (DfES, 2001b), <ul><li>A graduated response </li></ul><ul><li>An inclusive response for children </li></ul><ul><li>and professionals and parents </li></ul><ul><li>An evidence base response </li></ul>
  44. 47. Lets at least start with <ul><li>at risk groups </li></ul><ul><li>They may be identified for a number of reasons… </li></ul><ul><ul><li>behaviour, language, motor difficulties </li></ul></ul><ul><li>They represent a future risk group </li></ul>
  45. 48. Looking for the Sticky kids
  46. 49. The want: partnership working in children’s services is important <ul><li>Audit Commission, 1999; </li></ul><ul><li>DfE, 1994; </li></ul><ul><li>DfES/DoH, 2002; </li></ul><ul><li>Department of Health, 1997; </li></ul><ul><li>Department for Health, Department for Education, 2004a; </li></ul><ul><li>HAS, 1995; </li></ul><ul><li>House of Commons Health Select Committee, 1997; </li></ul><ul><li>WAG, 2002; </li></ul><ul><li>WAG, 2004 </li></ul>
  47. 50. Everyone's business <ul><li>Children’s mental health now seen as the business of all the people, agencies and services in contact with children and young people (EWG, 2003; Every Child Matters, 2003; NAW, 2001; NSF, WAG 2004 ) </li></ul>
  48. 51. Need for an interdisciplinary approaches for the “complex” child A right <ul><li>Who should do it? </li></ul><ul><li>Can we screen all or should it be opportunistic? </li></ul>
  49. 52. Need to start to support in school first
  50. 53. Starting at Tier 1 <ul><li>The Audit Commission (1999) identified three roles for Tier 1 professionals: </li></ul><ul><ul><li>Early identification of mental health problems; </li></ul></ul><ul><ul><li>Offering treatment for less severe problems; </li></ul></ul><ul><ul><li>Pursuing health promotion and problem prevention. </li></ul></ul><ul><ul><li>BUT AGAIN NEED TO SEE NOT ONLY MENTAL HEALTH ISSUES </li></ul></ul>
  51. 54. Need a common language <ul><li>Meaning the same thing- </li></ul><ul><ul><li>developmental disorders, specific learning difficulties, ASD, semantic pragmatic disorder , Autism, EBD, BES </li></ul></ul><ul><li>EVERY CHILD MATTERS </li></ul>
  52. 55. General good practice approaches Group approaches Specific tailored approaches
  53. 56. Support first <ul><li>Not labelling </li></ul>x
  54. 57. Stages <ul><li>Awareness and training </li></ul><ul><li>Attitude </li></ul><ul><li>Benchmarking of present understanding </li></ul><ul><li>Monitoring and evaluation processes implemented </li></ul><ul><li>Individual needs assessed </li></ul>
  55. 58. <ul><li>Strategies to meet all children's needs </li></ul><ul><li>Identifying when they are not working </li></ul><ul><li>Screening for complex difficulties- not as an add on but as an essential ( sticky kids) </li></ul><ul><li>Again.. There is the evidence PRU, LAC, SLI, DCD, ADHD………………………. </li></ul>
  56. 59. The present situation <ul><li>May only get help when your bucket is in one colour </li></ul><ul><li>We don’t check for the other colours routinely </li></ul><ul><li>When bucket is brown … don’t check on how it became that colour </li></ul><ul><li>Refer when the bucket is full/half full without trying to empty it first </li></ul><ul><li>Different levels in different places get referrals/diagnosis </li></ul>
  57. 60. DCD Dyslexia ADHD Behaviour and social difficulties DAMP
  58. 61. 80% full 75% full Get help … called Dyslexia, ADHD etc Don’t get help…
  59. 62. Get help … called Dyslexia, Asperger's Syndrome? Don’t get help called ADHD or SLI Same level of difficulty- different diagnosis
  60. 63. 2 difficulties filling the bucket Behaviour Language BUT ONLY TRYING TO SWITCH OFF 1 TAP
  61. 64. Need to consider an individual map
  62. 65. Stages of support <ul><li>Whole school </li></ul><ul><li>Whole class </li></ul><ul><li>Enrichment </li></ul><ul><li>Additional guidance by SENCO </li></ul><ul><li>Referral </li></ul>
  63. 66. If this approach is not working Then check out symptoms and signs BUT be aware of the overlap
  64. 70. Referral only <ul><li>When all previous stages completed </li></ul><ul><li>Unless there are red flags seen </li></ul>
  65. 71. Provide inclusive approaches <ul><li>Make sure the environment is not Dyslexia friendly or autistic friendly….. </li></ul><ul><ul><li>BUT CHILD FRIENDLY </li></ul></ul>
  66. 72. Changes in views in emerging adulthood
  67. 73. Growing up - impact on the family <ul><li>Physically bigger </li></ul><ul><li>Taking up more family time than other siblings </li></ul><ul><li>Parents losing time from work because of difficulties </li></ul><ul><li>Coping with puberty and experiences at a different stage to others </li></ul><ul><li>Gaps in provision </li></ul><ul><li>Problem coping with transition from primary to secondary school </li></ul>
  68. 74. Impact on family <ul><li>Mothers of children with ASD showed 50% higher rates of depression </li></ul><ul><ul><li>associated with low levels of family support and with bringing up a child with higher levels of challenging behaviour ( Bromley et al, 2004) </li></ul></ul><ul><li>A strong association between parental emotional distress and unmet need was found. </li></ul><ul><ul><li>Parents reported -more autism-specific intervention and support ( Hare et al, 2004) </li></ul></ul>
  69. 75. Leaving school <ul><li>No formal structures unless continue with college/university </li></ul><ul><li>Can get lost- no formal systems </li></ul><ul><li>Fewer formalised social opportunities </li></ul><ul><li>Less visible support from parents </li></ul><ul><li>Less forgiving support networks </li></ul><ul><li>No negotiator/translator to help mediate </li></ul><ul><li>Increased risk.. forensic pathway, sexually </li></ul>
  70. 76. Greater interaction without potential support
  71. 77. Additional new skills required
  72. 78. Misinterpretation of new information
  73. 79. increased risk of mental health disorders CUMULATIVE EFFECT Time pressures, new and varying work rules Social interaction Social isolation New people to interface travel and living ILS
  74. 80. Young person Agency e.g. employer/FE/HE Parent OUT OF THE LOOP
  75. 81. Situation mismatch <ul><li>e.g. Interviewing for a job or being in a tutorial at college </li></ul>COMMUNICATION SOCIAL RELATIONSHIPS INTERESTS
  76. 82. What is emerging adolescence? <ul><li>Arnett and Taber (1994) states that </li></ul><ul><li>“ Adolescence spans most of the second decade of life and is a period of economic dependency and knowledge acquisition in which information is accumulated and problem - solving techniques are learned. </li></ul><ul><li>Adulthood is the stage in which knowledge is applied.” </li></ul>
  77. 83. Key factor: CHOICE cured of “Dyschoolia”
  78. 85. <ul><li>“ Socially( at school) I tended to be isolated, but this was partly me trying to isolate myself from those who were not understanding. I ate my lunch inside classrooms, spent breaks in the library etc. anything I could to keep away from people. Throughout my entire secondary school experience I had about four friends, and they were all outcasts of one form or another, thus my group of friends were quite understanding and ignored my 'quirkiness'. I think finding people who can empathise is very important, and is possibly the only reason I survived school at all. At university I could start all over again, no one was knew who I was and therefore their opinion was not clouded by a view of me when I was at my most clumsy.” </li></ul>Student in HE
  79. 86. To become an adult <ul><li>Need for separation and individuation (Meeus et al,2005) has been seen as essential developmental stages to go through in order to reach adulthood </li></ul>
  80. 87. <ul><li>Separation from parents may be later than peers </li></ul><ul><li>Individuation may be later as less peer-peer interaction </li></ul>Delay in this process
  81. 88. <ul><li>Evidence in children with DCD : </li></ul><ul><ul><li>Lower general self concept-Skinner and Piek, 2001 </li></ul></ul><ul><ul><li>Stigmatisation ( Segal et al, 2002) </li></ul></ul><ul><ul><li>Internalisation (Sigurdsson et al, 2002) </li></ul></ul><ul><ul><li>Therefore less social practice </li></ul></ul>Lower peer-peer interaction
  82. 89. <ul><li>“ I was later than most of my peers in starting to experiment, starting just a few weeks before my 18th birthday. I didn't really have a lot of people to go out with, and I didn't usually enjoy it when I did because it simply seemed to be a less controlled extension of the social dynamics of school... i.e. I was outcast to varying degrees. Now, at university, I definitely don't drink more than some, but I'd say I was about average for my peer group at the moment” </li></ul><ul><li>Third year student </li></ul>
  83. 90. <ul><li>“ I certainly remember when I was at school; some of my friends did go out to pubs/clubs a couple of years before being 18. I never did though. I only went out with them, the night of the day the A-Levels results came out. I also didn't go out again, despite being at uni, until that Christmas. At university, I didn't go out until the end of the second semester in 1st year. So in school and university I have been going out later than my peers.” </li></ul><ul><li>2nd year student </li></ul>
  84. 91. Factors at play <ul><li>Less social experiences.. leads to more social isolation </li></ul><ul><li>Greater need for parental support </li></ul><ul><li>A model that has concentrated on deficits e.g. practising handwriting etc </li></ul><ul><li>NOT a strengths model- allowing the child to see what they CAN do. </li></ul><ul><li>Little focus on gaining the core set of skills ( especially if academically able)… e.g. organisation/independent living skills </li></ul>
  85. 92. Lerner at al (2001) describe a 3 stage process in progressing towards adulthood <ul><li>Trying out a range of skills and having a wide range of goals to start with </li></ul><ul><li>Narrowing down strengths </li></ul><ul><li>Learning to optimise these areas </li></ul>
  86. 93. <ul><li>Adults with DCD may have poorer ability in appraising a situation and to goal set accurately and create an appropriate hierarchy of importance </li></ul>
  87. 94. SOC model (Baltes, 1999) <ul><li>Successful adults select what they CAN do </li></ul><ul><li>Optimise their skills </li></ul><ul><li>Compensate for their difficulties </li></ul>
  88. 95. <ul><li>“ I have difficult time being organised on every level, even in thought. My wife thinks that if I plan out every single level of my actions before I do them whether I am driving or walking, that this will compensate for my problems. I genuinely try but often have trouble accomplishing my goal .Establishing a habit of organising everything I do is a daunting task. I have difficulties even remembering to plan everything” </li></ul><ul><li>(E-mail correspondence from a male, 32 years with DCD) </li></ul>
  89. 96. Selection <ul><li>the development by directing and focusing resources i.e. goal setting and to produce a goal hierarchy. </li></ul><ul><li>Guidance on making relevant, appropriate and achievable goal choices may be important for longer term functioning. </li></ul>
  90. 97. Optimisation <ul><li>- acquiring, refining, and applying goal relevant means or resources in the selected goals. </li></ul><ul><li>Creating goal hierarchies is important. </li></ul><ul><li>Children with DCD may remain at a stage of over selection and poor optimization resulting in following too many and the wrong goals. </li></ul><ul><li>This may have been associated with using a deficit model pursued by professionals in the past concentrating for too long on the skills they found the hardest. </li></ul>
  91. 98. Compensation <ul><li>Additional skills need to be acquired to maintain function and reset more appropriate goals- this is termed “ loss based selection” </li></ul>
  92. 99. What factors might influence the “successful” outcomes for adults with DCD? <ul><li>The severity of motor skill difficulties as a child </li></ul><ul><li>Level of co-occurrence( e.g. ADHD/ASD) </li></ul><ul><li>Cognitive ability </li></ul><ul><li>Self esteem/self worth </li></ul><ul><li>Ability to make the right choices- find strengths? </li></ul><ul><li>OR are there other particular resilience factors ? </li></ul>
  93. 100. Evidence that: <ul><li>The longer an individual is on a particular developmental pathway the less likely he or she will deviate from this pathway </li></ul><ul><li>(Bowlby, 1973,Cicchetti, 1993, Sroufe, 1997) </li></ul>
  94. 101. Measuring Success <ul><li>Success has been seen in individuals in populations exposed to “ incontrovertible adversity” </li></ul><ul><li>(Garmezy,1974, Rutter, 1979, Werner and Smith, 1992) </li></ul>
  95. 102. <ul><li>“ the capacity to &quot;bounce back&quot; from adversities.” </li></ul><ul><li>Masten (2004) </li></ul>Resilience is
  96. 103. <ul><li>Temperament </li></ul><ul><li>higher IQ </li></ul><ul><li>good social skills </li></ul><ul><li>awareness of strengths and limitations </li></ul><ul><li>empathy for others </li></ul><ul><li>an internal locus of control, </li></ul><ul><li>a valued social role in the household </li></ul><ul><li>good parent-child relationship </li></ul><ul><li>a sense of humour </li></ul><ul><li>attractiveness to others </li></ul><ul><li>a belief that one’s efforts can make a difference. </li></ul><ul><li>supportive extended family </li></ul><ul><li>successful school experiences </li></ul><ul><li>a close relationship with an unrelated mentor </li></ul><ul><li>participation in extra curricular activities. </li></ul>Influencers for resilience
  97. 104. 0 years 10 years 18 years 20 years Delay in progression towards adulthood Interaction Parental support Peer interaction ASD/DCD etc. Typically developing Individual
  98. 105. Successful progression <ul><li>Dependent on a range of factors </li></ul><ul><ul><li>Support structures around you </li></ul></ul><ul><ul><li>Adaptability </li></ul></ul><ul><ul><li>Resilience </li></ul></ul><ul><ul><li>Self esteem </li></ul></ul>
  99. 106. Changing relationships with service providers <ul><li>Adolescent becoming the client </li></ul><ul><li>Parents wanting information </li></ul><ul><li>Issues of disclosure </li></ul><ul><li>Still remaining a child </li></ul><ul><li>Isolation </li></ul><ul><li>Mismarriage of skills </li></ul>
  100. 107. Changing needs <ul><li>Focus on adaptation and avoidance </li></ul><ul><li>Narrowing of choices </li></ul><ul><li>Increasing need to be independent and socially able </li></ul>
  101. 108. After school choices
  102. 109. Sam - 16 ½ years (2007) <ul><li>Diagnosed with AS with co-ordination difficulties at the age of 6 ½ years. (WISC V=110, P=57) </li></ul><ul><li>At 6 ½ years he had seen 5 different professionals </li></ul><ul><li>Seen at the centre at 8 years and 10 years- no local provision </li></ul><ul><li>Has had a statement of educational since 7 years of age </li></ul><ul><li>Now 16 ½ - about to sit GCSEs’ this summer- predicted to do very well… but failed all at mocks… </li></ul><ul><li>parent told “ it’s how you interpret our information” </li></ul>
  103. 111. Sam <ul><li>Can’t walk to the shops alone </li></ul><ul><li>Can’t make a snack for himself </li></ul><ul><li>Has no friends </li></ul><ul><li>Has a younger sister who is worried about him as when he gets angry he bites himself .In play he pushes her hard and now can hurt her </li></ul>
  104. 112. Mum went to GP… <ul><li>Referred to CAMHS.. told “don’t expect to hear for a while, we will contact you” </li></ul><ul><li>Referred to disability service- “… he may not fit our criteria” </li></ul><ul><li>Visited college… good advice- vocational taster course… but with only learning disabled students – “ he may be too bright for this course” </li></ul>
  105. 113. What help has he had? <ul><li>Full time LSA for 10 years!!!- practicing handwriting still… written in IEP for past 2 years </li></ul><ul><li>No social skills intervention in place </li></ul><ul><li>No NAS befriender scheme in the area </li></ul><ul><li>No transition plan for the next stage even though the LEA has one on their website! </li></ul><ul><li>Sitting on his own for the summer…. </li></ul>
  106. 114. What does he need? <ul><li>A real transition plan for the next stage of his life </li></ul><ul><li>Practical help now with examinations- he has a laptop ( weighs 2kgs and has a short battery life ) but cannot spell and has a typing speed below acceptable levels to be used </li></ul><ul><li>Training in independent living and social and communication skills </li></ul><ul><li>IEPs’ and an ILPs’- looking forward 5 years </li></ul>
  107. 115. Going to university
  108. 116. Present…. <ul><li>May have already have a diagnosis </li></ul><ul><li>May have a diagnosis but not disclose to others </li></ul><ul><li>Others increasingly concerned </li></ul><ul><li>He/she may not be concerned </li></ul>
  109. 117. University offers <ul><li>New opportunities </li></ul><ul><li>Focussing on interests </li></ul><ul><li>Hall of residence to stay in </li></ul><ul><li>Student support/DSA/mentor programmes </li></ul>
  110. 118. Diagnosis at 15 years New assessment and report Individual pays for it Apply for DSA if full time… not available for short courses Access Centre…. Another town Meet student support services…delay in provision for a term after starting… Processes complex
  111. 119. John 21 years <ul><li>ASD diagnosed at 11 years, speech unclear and co-ordination difficulties </li></ul><ul><li>He has 3 A levels- in SEN unit- had lunch every day in the unit until he left.. </li></ul><ul><li>Advised to join the Christian Union to make friends! </li></ul><ul><li>Left university 2 nd term- could not cope with group work/getting to university/planning assignments </li></ul><ul><li>Currently on a psychiatric ward being treated for anxiety/depression </li></ul>
  112. 120. John <ul><li>No support locally available </li></ul><ul><li>Little or no independent living skills </li></ul><ul><li>Does not want to grow up! </li></ul><ul><li>Mum and dad getting older- needing time off work to go to appointments with him or being run at work 10 times a day by Chris </li></ul><ul><li>Anxious using public transport </li></ul>
  113. 121. FE and HE issues <ul><li>Managing daily living without the support of family members and lack of contact with parents with student support ( as an adult!) </li></ul><ul><li>Staying on schedule </li></ul><ul><li>Keeping living space clean </li></ul><ul><li>Personal hygiene </li></ul><ul><li>Taking care of health needs </li></ul><ul><li>Finances </li></ul><ul><li>Navigating an unfamiliar campus </li></ul><ul><li>Trapped in bedroom </li></ul><ul><li>Noisy and confusing places (e.g. the dining hall) </li></ul>
  114. 122. Specific course issues <ul><li>Interpreting academic expectations and requirements </li></ul><ul><li>Balancing course demands </li></ul><ul><li>Working in groups </li></ul><ul><li>Sitting in noisy and crowded lecture theatres- knowing when work applies to him… “ everyone” may not mean Bob! </li></ul>
  115. 123. Preparation for success <ul><li>Attend summer school </li></ul><ul><li>Work buddy </li></ul><ul><li>Befriender scheme starting before the start of term/student mentor- show around campus </li></ul><ul><li>Study skills and student support services </li></ul><ul><li>Lecturers aware of issues </li></ul><ul><li>Appropriate examination arrangements </li></ul>
  116. 124. To diagnose or not??
  117. 125. To receive help in university: <ul><li>Disability Student Allowance </li></ul><ul><li>“ In addition to the use of standardised measures of underlying ability, cognitive processing, and attainments in literacy (and numeracy), supplementary methods of information-gathering that inform the diagnostic process may be employed. These might include information concerning conditions such as Dyspraxia/DCD and disorders of attention, drawn from qualitative evaluations of the student’s functioning, from assessments carried out by other appropriate professionals (e.g. occupational therapists) and from recognised checklists.” </li></ul><ul><li>p.10 </li></ul>
  118. 126. In order to receive DSA <ul><li>Recognise you have a difficulty </li></ul><ul><li>Disclose to others </li></ul><ul><li>Have a “test” in the past 2 years </li></ul><ul><li>Show you have a motor deficit </li></ul>
  119. 127. Issues <ul><li>Awareness </li></ul><ul><li>Want to have a label and tell others </li></ul><ul><li>No where to go to be tested- have clear cut symptoms </li></ul><ul><li>Have a standardised test </li></ul><ul><li>Meet diagnostic criteria </li></ul><ul><li>Have support appropriate to you not the label </li></ul>
  120. 128. Issues <ul><li>Awareness- Insight </li></ul><ul><li>Want to have a label and tell others- peer views/fear of fixed perceptions </li></ul><ul><li>No where to go to be tested- have clear cut symptoms- few professionals </li></ul><ul><li>Have a standardised test- no ecologically valid test </li></ul><ul><li>Meet diagnostic criteria - DSMIV written for children </li></ul><ul><li>Have support appropriate to you not the label- likely to have co-ocurring disorders </li></ul>
  121. 129. Diagnosis/labelling <ul><li>Social v medical model </li></ul><ul><li>Medical model </li></ul><ul><ul><li>you have a problem/different from the norm </li></ul></ul><ul><ul><li>Someone diagnoses you </li></ul></ul><ul><ul><li>You need to be changed </li></ul></ul><ul><li>Social model </li></ul><ul><ul><li>Society has to provide for all shapes and sizes </li></ul></ul><ul><ul><li>Society’s responsibility </li></ul></ul><ul><ul><li>the position of disabled people and the discrimination against them is socially created. e.g. a written assignment for an electrician’s course. </li></ul></ul><ul><ul><li>Need for universal design </li></ul></ul><ul><ul><li>In university- different assessment processes </li></ul></ul><ul><ul><li>Lectures accessible in different formats </li></ul></ul>
  122. 130. Assessment needs to include <ul><li>Cognitive functioning </li></ul><ul><ul><li>+ associated comorbidities </li></ul></ul><ul><ul><li>(e.g.ADHD,expressive/receptive language, motor difficulties) </li></ul></ul><ul><li>Level of independent functioning- ? Using an ICF framework </li></ul><ul><li>Availability of help </li></ul><ul><li>Corroboration from additional sources e.g. parent/teacher/employer/friend </li></ul><ul><li>Green, J., Gilchrist, A., Burton, D., et al (2000) Social and psychiatric functioning in adolescents with Asperger syndrome compared with conduct disorder. Journal of Autism and Developmental Disorders , 30 , 279–293 </li></ul>
  123. 131. General issues
  124. 132. Falling through the gaps
  125. 133. Key challenges <ul><li>Terminology </li></ul><ul><li>Training ( Shirley Foundation report) </li></ul><ul><li>Transition planning starting too late, not linked to independent skills </li></ul><ul><li>Tracking </li></ul>
  126. 134. Terminology GPs and health professionals understanding about Asperger’s Syndrome <ul><li>Survey of 100 GPs 18 % did not know what Asperger’s Syndrome was- gave no definition </li></ul><ul><li>Kirby,2003 </li></ul><ul><li>UK survey of 1500 people in mainstream population </li></ul><ul><li>66% had heard of AS but only 35% knew what the symptoms were compared to Dyslexia (96.3% and 90%) (2007) </li></ul>
  127. 135. Out of 72% of GPs’ who said they knew what AS was some descriptions given: <ul><li>Sudden jerky movements and use of abusive words </li></ul><ul><li>Hyperactive learning difficulties </li></ul><ul><li>Attention and co-ordination difficulties </li></ul><ul><li>Attention in an older age group </li></ul><ul><li>More severe form of ADD </li></ul><ul><li>Disorders of mucociliary movements ! </li></ul><ul><li>Genetic disorder- attention problems </li></ul><ul><li>ADHD, Dyslexia and social </li></ul><ul><li>Part of Dyspraxia </li></ul><ul><li>Spectrum of disease, hyperactive and learning difficulty </li></ul>
  128. 136. Transition planning <ul><li>Know the dates and plan ahead </li></ul><ul><li>Consider the comorbid issues such as ILS </li></ul><ul><li>Provide relevant information on ASD in adulthood </li></ul><ul><li>Make contact with local support groups </li></ul><ul><li>Educational accommodations planned in advance </li></ul><ul><li>Life skills coaching started early </li></ul><ul><li>Vocational services </li></ul>
  129. 137. Local initiatives <ul><li>BOLD and Fingerprint project- key worker scheme, highlight functional difficulties and provide tailored training packages and enable move from training into supported employment </li></ul>
  130. 138. Health Condition ( disorder/disease ) Interaction of Concepts ICF 2001 Environmental Factors Personal Factors Body function&structure (Impairment ) Activities (Limitation) Participation (Restriction)
  131. 139. Consider what adjustments have already been useful <ul><li>Photocopied notes </li></ul><ul><li>Additional time for assignments </li></ul><ul><li>Use of Microsoft Outlook or Access to lectures on Blackboard </li></ul><ul><li>Text to speech software – Dragon Dictate ( take time to learn it) </li></ul><ul><li>Speech to text- listen to what you have read- e.g. Claroread </li></ul><ul><li>Use of a phone with a diary/timer/to do list/recorder </li></ul>
  132. 140. Need to talk to student support services/employers <ul><li>Additional time for tasks </li></ul><ul><li>Information in a written format </li></ul><ul><li>Showing how to do “ simple” tasks such as photocopying </li></ul><ul><li>Setting up systems on the computer to file </li></ul><ul><li>Posture and seating </li></ul>
  133. 141. Considering choices for moving to college /uni/away <ul><li>Risk analysis when choosing place and course </li></ul><ul><li>Number of changes- independent living skills </li></ul><ul><li>Orientation around a new place </li></ul><ul><li>Making friends </li></ul><ul><li>Managing money </li></ul><ul><li>Managing transport </li></ul><ul><li>Level of support required at present </li></ul>
  134. 142. Preparation for new college/employment /university <ul><li>Find out the lay of the land- campus or in town </li></ul><ul><li>Practice the journey </li></ul><ul><li>Walk around the campus- orientate buildings </li></ul><ul><li>Check out early disability provision- amount of student support, type, knowledge of students with Dyspraxia </li></ul><ul><li>Social times – how will they meet others, drinking experience, clubbing.. </li></ul>
  135. 143. Advice to providers or employers <ul><li>Additional time for tasks </li></ul><ul><li>Information in a written format </li></ul><ul><li>Showing how to do “ simple” tasks such as photocopying </li></ul><ul><li>Setting up systems on the computer to file </li></ul><ul><li>Posture and seating </li></ul><ul><li>What training has been given to staff? </li></ul><ul><li>Where to go for help/advice </li></ul>
  136. 144. Consider room in hall or flat <ul><li>Mix of students …. </li></ul><ul><li>Large laundry basket </li></ul><ul><li>Coloured trays to “ throw “ notes </li></ul><ul><li>Easy kit to clean bathroom/kitchen </li></ul>
  137. 145. <ul><li>Notice board- pins to pin up all papers/bills/time table etc </li></ul><ul><li>PDA or Phone to use for appointments </li></ul><ul><li>Cook’s survival kit of a couple of recipes practiced- one pot meals e.g.mince + </li></ul>
  138. 146. Dress and ILS codes <ul><li>Shaving/washing/changing rules </li></ul><ul><li>Social codes- going for a drink/coffee </li></ul><ul><li>Local pubs- drinking experiences- ordering, asking, balancing drinks </li></ul>
  139. 147. Consider also extracurricular activities <ul><li>What clubs are there that could be joined? </li></ul><ul><li>Is there a student buddy /mentor system </li></ul><ul><li>What about housing/accommodation? </li></ul><ul><li>Risk analyse….the ability to work </li></ul><ul><ul><li>AND </li></ul></ul><ul><li>cook, shop, budget etc associated… v living at home </li></ul>
  140. 148. Preparing for the workplace <ul><li>Application - printing or writing cover letter </li></ul><ul><li>Interview - have some questions prepared, assess the job and think where problems may occur </li></ul><ul><li>Issues around disclosure to consider </li></ul><ul><li>Ask for time to learn new processes </li></ul><ul><li>Think of type of job to choose- self employed, part time, outside, structured office </li></ul>
  141. 149. Perseverance is not a long race; it is many short races one after another. Walter Elliott
  142. 150. Training initiatives <ul><li>For trainers : OCN level 2 and 3 train the trainers programme e.g. social service workers/colleges </li></ul><ul><li>PACTS project- training for FE/colleges and employers- after needs analysis undertaken by direct/CD training materials and website www.pactsproject.com </li></ul>
  143. 151. <ul><li>Setting training standards </li></ul><ul><li>For employers </li></ul><ul><li>For colleges and universities </li></ul><ul><li>Dyslexia friendly/AS friendly….. Friendly </li></ul>
  144. 152. Training events across the UK and train the trainers packs for over 800 employers and vol. sector organisations Targeted at those working with post 14 e.g. The FA , Police, Sports centres,
  145. 154. Who is the keyworker?
  146. 155. Barriers to effective inter-agency working Conflicting policies, procedures, priorities and funding streams Lack of understanding about roles and responsibilities Lack of co-ordination Different organisational cultures Communication difficulties Professional ‘silos’ Separate systems History
  147. 156. Conclusions <ul><li>Supporting the child , adolescent and family needs a key worker to plan well ahead for times of transition- who this is may change over time </li></ul><ul><li>Predicting the difficulties rather than waiting for them to occur </li></ul><ul><li>Need to develop appropriate adolescent services- education/OT/social services/psychiatry </li></ul><ul><li>Training and information giving for parents once adults left the formal systems </li></ul>
  148. 157. The issues are ELEPHANTINE! <ul><li>` Beyond Ghor there was a city.  All its inhabitants were blind.  A king with his entourage arrived near by; he brought his army and camped in the desert.  He had a mighty elephant, which he used in attack and to increase the people's awe. </li></ul><ul><li>  The populace became anxious to see the elephant, and some sightless from among this blind community ran like fools to find it.  As they did not even know the form or shape of the elephant they groped sightlessly, gathering information by touching some part of it.  Each thought that he knew something, because he could feel a part. </li></ul>
  149. 158. <ul><li>When they returned to their fellow citizens eager groups clustered around them.  Each of these was anxious, misguidedly, to learn the truth from those who were themselves astray.  They asked about the form, the shape of the elephant; and listened to all that they were told.  The man whose hand had reached an ear was asked about the elephant's nature.  He said: &quot;It is a large, rough thing, wide and broad, like a rug.&quot;  And the one who had felt the trunk said: &quot;I have the real facts about it.  It is like a straight and hollow pipe, awful and destructive.&quot;   The one who had felt its feet and legs said: &quot;It is mighty and firm, like a pillar.&quot; </li></ul>
  150. 159. Key points <ul><li>Developmental disorders are not discrete but part of a spectrum </li></ul><ul><li>Segmented training on specific learning difficulties can lead to confusion and delays in referral as parents traverse a system </li></ul><ul><li>Need for a common language and pathway </li></ul><ul><li>Whole school training especially in secondary schools about approaches not diagnoses.. </li></ul><ul><li>Need to train those working with children with </li></ul><ul><li>“ behaviour” issues to check out what else MAY be going on. </li></ul><ul><li>6. At risk kids should be automatically screened for SPLDs’ </li></ul>
  151. 160. Thank you [email_address] www.dyscovery.co.uk