1. Fetal Alcohol Spectrum Disorder 16 th June 2014 Follow us on twitter @rcpchscotland and join in the conference conversation at #fasd14

2. Improving Learning Outcomes for children and young people with FASD Jo Egerton Schools Research Consultant & Educational Writer

3. One in 100 ?

4. ‘...we estimate that the current prevalence of FASD in populations of younger school children may be as high as 2-5% in the US and some Western European countries.’ May, P.A., Gossage, P.J. et al. (2009) Dev. Disabil. Res. Rev. 15:176-192

5. ‘A seriously under reported condition… It’s a huge spectrum so difficult to diagnose.’ Joyce Leggate, drug liaison midwife from Forth Park Hospital in Fife REPORTED BY Jolene Cargill, Newsnet Scotland's Social Affairs Editor

6. Based on the figures published in 2002, we know there are approximately 6,000 children with Foetal Alcohol Spectrum Disorder who have now reached school age. (Blackburn, 2009; Blackburn, Carpenter and Egerton, 2012) A hidden population... UK figures

7. As few as five children a year are being diagnosed with FAS in Scotland and none are diagnosed with FASD. If Scotland reflected World Health Organisation statistics, around 50 children would be diagnosed with FAS every year and over 500 with FASD. Other figures have indicated that up to one in ten and as many as 9,000 could be suffering from FASD in Scotland. Scottish figures NewsnetScotland.com, 28.1.11

8. World Health Organisation global strategy ‘…improving capacity for prevention of, identification of, and interventions for individuals and families living with fetal alcohol syndrome and a spectrum of associated disorders’ 63 rd World Health Assembly (May 2010) Policy Options & Interventions (A63/13: item 21c)

9. Hidden in plain sight “Children with FASD are true clinical masqueraders, and ADHD is their most likely disguise.” (O’Malley, 2007)

10. Difficulties that disrupt learning Developmental level of functioning Sensory systems Language and communication Processing pace: How fast the brain works Learning and memory Abstract thinking Executive functioning Diane Malbin (2012) ‘Neurobehavioral approach to developing effective interventions’ FASDLive September 12-14 Saskatoon, SK A –

11. Unique children ‘Educating and caring for these children…needs a unique approach that relies on reflective practice and adaptive teaching techniques.’ Blackburn, C. (2009) Building Bridges with Understanding Project. Foetal Alcohol Spectrum Disorder: Focus on Strategies. Worcester: Worcestershire Early Years and Childcare Service.

12. Eva… ‘…had extensive physical difficulties, so much so that we were warned that these may be life- limiting. She was deaf, used Makaton, failed to thrive, didn’t sleep, was frustrated, delayed, had poor interaction with peers, chronic eczema and asthma, and required a strict diet. At one stage she was seeing 11 consultants!’ Foster parent http://www.bemyparent.org.uk/features/hurdles-and- happiness,294,AR.html

13. ‘I struggled to make and keep friends. I was the class clown. All I wanted was for the other kids in the class to like me. My mum said the cleverer kids in the class used to use me and set me up. Resulting in me always being in trouble in primary school... I am always pushing the boundaries and do not learn from my mistakes.’ Matthew, FASAware

14. Brain basis of FASD – The gift of knowledge ‘During the year of going to the doctors we started reading and learning about FAS and FASD... I started to learn more and more about myself. I learned that I wasn’t stupid, that I actually have organic brain damage.’ http://indiancountrytodaymedianetwork.com/2011/09/05/fetal- alcohol-syndrome-rate-higher-among-american-indians-48085

15. Brain structure impact Neurons are destroyed, deformed and/or displaced Brain structures are weakened Brain messages are disrupted Brain activity is no longer adaptive and predictable Brain cannot function properly

16. Brain differences – wired differently Fetal Alcohol Syndrome Brain of baby with Brain of baby with heavy no alcohol exposure prenatal alcohol exposure (Photo: Sterling Clarren, MD)

17. Brain differences – wired differently Fetal Alcohol Syndrome Decreased production of neurotransmitters Executive functioning reduced (Corpus Callosum) Memory affected (Hippocampus) Elliott et al. (2007) (Kellerman, 2000-2010)

18. ‘None of the behaviour techniques we tried worked: unlike the other children I had cared for (two birth children, adopted twin boys, and 34 fostered children), Jasmine didn’t respond to anything.’ ‘Skills required to parent [Eva] tested our devotion and exhaustion levels as she just didn’t understand or act like any other toddler I had come across.’ Foster parent http://www.bemyparent.org.uk/features/hurdles-and-happiness,294,AR.html

19. Resulting in… Concrete thinking Poor decisions Lifelong problem behaviours We need respond adaptively to help the damaged brain to function better.

20. Professor Barry Carpenter http://www.youtube.com/watch?v=v1jphhbS9rg (2.02-2.29)http://www.youtube.com/watch?v=v1jphhbS9rg ‘Headteachers need the type of information that gives them a sound, solid appreciation of how fetal alcohol spectrum disorder is going to impact on the effectiveness of the child as a learner.’

21. Shauna, age 6 – ‘a bit young for her age; not catching up’ Eager and happy, expressive and talkative Highly distractible - diverted by even the smallest distraction Does not seem able to follow directions. Things Shauna knows one day seem to be gone from her memory the next. After 6 weeks, Shauna still has not grasped classroom routines The teacher has not been successful in helping her catch up. Still uses an immature grasp to write Shauna is making progress in reading Her math and writing skills are at preschool or kindergarten level She has made only one friend because of her immature behavior She has had several temper tantrums, often when the schedule for the day has changed unexpectedly. (Department of Health and Human Services, 2007)

22. © FASD Trust / Jodee Kulp, www.betterendings.orgwww.betterendings.org Developmental profile of

23. ‘Whilst she reads as a 14 year old, I will teach her as a 14 year old.’ (Headteacher)

24. Reframing our understanding Redefining behaviours as symptoms Achieving change through accommodations Standard interventions don’t work! We need appropriate responses… Diane Malbin (2012) ‘Neurobehavioral approach to developing effective interventions’ FASDLive September 12-14 Saskatoon, SK A –

25. ‘FA affected adolescents are usually 1/2 their age in terms of their emotional and social development. So if you are 16, you are probably acting more like an 8 year old, but if you are in a 16 year old body, people expect you to behave that way.’ Sandra Clarren, Psychologist

26. Making a difference The compelling evidence for neuroplasticity in early brain development… suggests that early intervention for children with FASDs may represent a critical opportunity to remediate some of the brain damage done by PAE. (Paley and O’Connor, 2009)

27. Beginning to understand Alberta Learning (2004) Teaching Students with Fetal Alcohol Spectrum Disorder: Building Strengths, Creating Hope. Edmonton: Alberta Learning. https://education.alberta.ca/media/377037/fasd.pdf https://education.alberta.ca/media/377037/fasd.pdf

28. How I learn best by Sidney Guimont (a young woman with FASD) Some people find it impossible to believe my problems… Following verbal instructions sometimes confuses me. When I’m asked to do something like take out the garbage, I won’t understand or the words get all mixed up in my mind. For example, my stepfather gives me a command to do something, and it’s like I don’t hear him clearly, even if he is in the same room. It’s like I block out words and phrases. Visual contact is a very important way of learning for me. When a teacher shows a topic, I can understand it. I am not able to focus on reality if disaster strikes. I am acting on excitement. http://fasdcenter.samhsa.gov/documents/reach_to_teach_final_011107.pdf

29. YouTube videos – Students like me (episodes 1-9)

30. Accommodations FASD characteristics Visual learner Processes slowly Needs external support Difficulty organizing Concrete thinker Strategy Provide visual cues Allow adequate time Provide supports Provide structure Teach experientially, build on strengths Diane Malbin (2012) ‘Neurobehavioral approach to developing effective interventions’ FASDLive, September 12-14 Saskatoon.

31. Accommodations FASD characteristics One thing at a time Memory problems Impulsive Easily overstimulated Difficulty predicting Difficulty problem solving Strategy Provide step-by-step cues and guidance Provide visual support; Repeat, repeat Structure and rehearse Provide calming opportunities Provide visual cues, role play situation, Social Stories, etc. Adapted from: Diane Malbin (2012) ‘Neurobehavioral approach to developing effective interventions’ FASDLive, September 12-14 Saskatoon.

32. Attention ‘For children with FAS, their attention is where their eyes are.’ Students like me (http://www.youtube.com/watch?v=_t5TuEDeKCs)http://www.youtube.com/watch?v=_t5TuEDeKCs

33. Communication Keep communication concrete; problem with abstracts Instead of ‘Get ready for lunch’, be specific about what they need to do Demonstrate when possible

34. Maths difficulties http://www.youtube.com/watch?v=H5O0OEPKfxE http://www.youtube.com/watch?v=H5O0OEPKfxE 1:25-3:05

35. Transitions Bridging tasks (e.g. collecting resources) Hour glass as visual countdown Songs signalling end of the activity Transition buddy

36. http://www.knowledge.scot.nh s.uk/home/learning-and- cpd/learning-spaces/fasd.aspx NHS Scotland interactive resource on fetal alcohol harm Use as training materials for staff, but much of the material could be used as a stimulus for discussions with students in school.

37. Fetal Alcohol Spectrum Disorder Awareness Toolkit (ISBN: 9781782568711) Information and tools to help raise awareness of fetal alcohol spectrum disorder Contact: Gillian Heavie Do to Learn FASD Toolbox http://www.dotolearn.com/disabilities/FASDtoolbox/in dex.htm

38. Publications by Carolyn Blackburn, Professor Barry Carpenter, and Jo Egerton http://sunfield.org.uk/pdf/FASD_strategies.pdf http://www.worcestershire.gov.uk/cms/pdf/2010- 05%2054126%20FASD%20information%20sheets% 20AMENDED%20v1.pdf http://www.worcestershire.gov.uk/cms/pdf/2010- 05%2054126%20FASD%20information%20sheets% 20AMENDED%20v1.pdf

39. Scroll down FASD TEACHING RESOURCES www.nofas-uk.org

40. http://complexneeds.org.uk

41. Steering away from bleak outcomes Whatever IQ – born with brain damage Poor self-esteem Communication difficulties Affinity for the excitement of class clowns (easy-to-read expressions; everyone contributes; exciting situation) Simple cause and effect; plays to affinity/fascination with people Counter order

42. Building from strengths These strengths will become the foundations on which to develop personalised curricula, to encourage and develop further strengths and build emotional resilience.

43. Discovering strengths That moment that Morgan Fawcett, a young man with FASD, first held the Native American flute was ‘the most exhilarating experience of his life’. …becoming a flutist helped save him. He would play during his lunch hour at school, and he realized he could retain and recall information better in the afternoon. His grades in his afternoon classes were significantly better than the grades he was getting in his morning classes. http://indiancountrytodaymedianetwork.com/2011/09/05/fetal-alcohol- syndrome-rate-higher-among-american-indians-48085

44. Often gregarious, fun loving, caring and affectionate. Can be sensitive, loyal, kind and trusting in relationships Can succeed in structured situations. Often enjoy repetitive work Strong sense of fairness Strong visual memories, Good verbal fluency Positive use of visual language techniques. They can often Learn effectively using a hands-on approach. A rich imagination which enhances storytelling Creativity in visual arts and music Athletic skills in individual sports. High energy level Talents and Strengths Release the learner inside the child Alberta Learning (2004) Teaching Students with Fetal Alcohol Spectrum Disorder: Building Strengths, Creating Hope. Edmonton: Alberta Learning. https://education.alberta.ca/media/377037/fasd.pdf https://education.alberta.ca/media/377037/fasd.pdf

45. Relational - 1:1 Visual Hands-on Kinesthetic -- see, touch, move Experiential -- learns by doing Multimodal -- uses all senses Learning Strengths (e.g. Use of Strengths and Difficulties Questionnaire)

46. Advice from Liz Kulp, a young woman with FASD http://www.braidedcord.net/ideas-family.html http://www.braidedcord.net/ideas-family.html Anxiety – Routines – Schedules Memory issues – Provide one direction or rule at a time – Review rules regularly. – Use a lot of repetition, repetition, repetition and if I forget repetition, repetition, repetition! Over stimulation – Simplify my environment – Provide one-to-one physical presence. – Know what situations over stimulate me Sensory differences – Learn my sensory triggers and help me learn to avoid them – I may not like to be tickled or touched – Provide "chill down zones" for comfort and safety

47. Morgan Fawcett on living with FASD http://www.youtube.com/watch?v=K0VrkLQfkFg

48. ‘ Resilience factors are those processes which buffer or minimise the effects of adverse stimuli on a person.’ Pretis and Dimova (2007)

49. Giving them a voice – say when they don’t understand; practice the words; don’t let yourself be put down Role models, including FASD role models Pride – do things before peers (e.g. get a job)

50. Teacher of a 13 year old girl with FASD Http://www.nofas-uk.org/ http://www.youtube.com/watch?v=lgY9jSUkOhc 1:04-2:20 Http://www.nofas-uk.org/ http://www.youtube.com/watch?v=lgY9jSUkOhc ‘Most of her difficulties stem from her impulsive behaviours. She finds it very difficult to regulate her behaviours, especially in an environment where there is a lot of stimulation going on. A lot of noise, a lot of people around or tactile objects that might be fun to touch or to look at – that can really affect her focus.’

51. ‘Students like me – episodes 1-9) Childbirth Media Centre. http://www.youtube.com/watch?v=IXS-dpF-P9I

52. Vulnerability Finding happiness within the context of his disability is going to depend a lot on Iyal feeling safe because he’s so vulnerable it’s going to be a lifelong job to keep him protected and safe. The story of Iyal http://www.cdc.gov/ncbddd/fasd/videos/index.html http://www.cdc.gov/ncbddd/fasd/videos/index.html

53. Social support Do peers baby them or shun them? Role play Social stories Friendship circles Friendship with older children of the same sex Friendship with the little girl next door needs to be along on adult appropriate lines Appropriate social distance, friendships,

54. Mental health At all times in their life, up to 90% of people with FASD are likely to have mental health problems, including when they are children. They need loving support to gain a healthy and positive self-image, and to accept their unique differences. Egerton, J. (2009) Building Bridges with Understanding Project. Foetal Alcohol Spectrum Disorder: Information sheets. Worcester: Worcestershire Early Years and Childcare Service.

55. Secondary behavioral symptoms Easily tired, fatigued Anxious Lonely, isolated Shut down; flat affect Fearful, withdrawn Depressed Frustrated, short fuse, angry FASDLive 2012 September 12-14 Saskatoon, SK A Neurobehavioral Approach to Developing Effective Interventions – Diane V Malbin

56. Tertiary symptoms Are the net result of a chronic poor fit, failure, isolation and alienation: Trouble in school Social services involvement Involvement with justice Homelessness Addictions/ mental health issues, suicide FASDLive 2012 September 12-14 Saskatoon, SK A Neurobehavioral Approach to Developing Effective Interventions – Diane V Malbin

57. ‘Children (with FASD) who do not complete compulsory education often find themselves homeless, chronically unemployed, and/or mentally ill.’ (Meier, 2008)

58. Bleak outcomes The life-long implications of Foetal Alcohol Spectrum Disorder are often compounded by secondary disabilities in adulthood such as mental health problems, drug addiction and involvement in criminal activity, with mental health problems escalating during adulthood – 23% of adults with Foetal Alcohol Spectrum Disorder have attempted suicide whilst as many as 43% have considered it. (www.come-over.to/FAS/fasconf.htm)www.come-over.to/FAS/fasconf.htm

59. Matt

60. Megan

61. Evan

62. A stable and caring home - the greatest protective factor to outcome is supported Early identification and a good stable environment can improve the odds of avoiding adverse life events by 2- to 4- fold.8 K Protective factors

63. Why diagnose? Interventions are counter-intuitive Mental health – Child in control – Something they know more about than peers – Something people want to know/hear about Families can change their behaviour Educators and families can plan ahead

64. Why won’t people dignose No services specific to FASD Lack of professional confidence around diagnosis Lack of professional awareness Political will Not recognised In denial Stigmatising families

65. Why is it important for children and families to recogise FASD People judge them differently – make allowances Parents can stop searching for a label that explains the constellation of difficulties Allows people to adjust their expectations Optimise the learning environment

66. Families and parents We both now care full time for our three children. Working would not be an option: every day we have a meeting or medical appointment for the children. Sleep deprivation is the hardest to overcome... Eva went for respite after her carers were trained for four months and it broke down after one night... there are not enough carers who could cope with our children http://www.bemyparent.org.uk/features/hurdles-and-happiness,294,AR.html

67. Refusal by Local Authority to recognise child’s disabilities Told to ignore the diagnosis Little insight into the child’s needs No apparent understanding of what parents were going through Parenting competence questioned until parents’ complaint upheld http://www.bemyparent.org.ukhttp://www.bemyparent.org.uk / newsnetScotland.com The Parents’ Struggle

68. 4 Capacities

69. FASD is a lifelong condition with effects that differ from age to age throughout the lifespan. These effects cannot be changed, but they can be accommodated Although there is no cure for FASD, with the right support young people with FASD can lead fulfilling and rewarding lives

70. ‘…be realistic about your expectations of children with FASD. Provide constant supervision, clear boundaries, consistent routines and a structured environment; use simple concrete language, and be prepared to repeat instructions and rules.’ Blackburn, C. (2009) Building Bridges with Understanding Project. Foetal Alcohol Spectrum Disorder: Focus on Strategies. Worcester: Worcestershire Early Years and Childcare Service.

71. Hope - If there is one thing I want to tell teachers it is that there is so much hope for this population... We are seeing success. When we have the appropriate resilient environment; when we have parents and teachers working together; when we have teachers and other professionals who understand the disability of fetal alcohol [spectrum disorders]. Deb Evenson (http://www.youtube.com/watch?v=_t5TuEDeKCs)http://www.youtube.com/watch?v=_t5TuEDeKCs

72. FASD organisations FASDScotland http://www.fasdscotland.com/ info@FASDscotland.com https://www.facebook.com/pages/FASD-Scotland/154860631375004 Contacts: Eileen and Ray Calder European Birth Mum Support Network Contact: Pip Williams:e urobmsngroup@yahoo.com e urobmsngroup@yahoo.com NOFAS-UK www.nofas-uk.org.uk Contact: Susan Fleisher FAS Aware - http://www.fasaware.co.uk/http://www.fasaware.co.uk/ Contacts: Ali McCormick and Gloria Armistead FASD Trust - www.fasdtrust.co.ukwww.fasdtrust.co.uk Contact:s Simon and Julia Brown

73. Fetal Alcohol Spectrum Disorder 16 th June 2014 Follow us on twitter @rcpchscotland and join in the conference conversation at #fasd14