Understanding Special Needs: Overview of Autism and Related Conditions

1. Understanding special needs 15th February 2011

2. Introduction • ASD or PDD • First identified in 1943 – Leo Kanner • They are a range of complex, lifelong developmental disabilities which vary in severity • Includes autism, Asperger’s syndrome, Rett syndrome, atypical autism and childhood disintegrative disorder

3. Introduction • Exact number of children with autism is unknown - ? 6 in every 1000 • If one child has autism, more likely that sibling will develop autism • Rise in recognition of the condition • Unproven link with MMR • Effects all social and racial groups • Boys more affected than girls • About 75% of children with autism also have a learning disability • No cure, but there are effective management strategies and educational programmes

4. What happens A child will demonstrate difficulties in 3 areas (Wing and Gould 1979) • Impairment of social interaction • Impairment of social communication • Impairment of social imagination

5. Key features of autism • Social interaction • Cannot make sense of people • Relates better to objects than people • Will only tolerate being approached or approaching people that they know really well • May only see people as a means to an end • Is usually unaware of simple rules and conventions

6. Key features of autism • Social communication • Slow to develop speech or no speech at all • Uses words out of context or without communicative intent • Echolalia • May use words and then lose them • Poor eye contact • Rarely understands or uses gestures • May use pointing to indicate need rather than to share an experience

7. Key features of autism • Social imagination and flexibility of though • Finds it hard to make sense of a sequence of activity • Loves routine • Stereotypical body movements • Often resists new experiences • Poor symbolic play • Often pays attention to particular details • May be hypersensitive to sound Every child’s profile is different

8. Associated features and disorders • Intellectual disability – moderate range • Behavioural difficulties e.g. hyperactivity, short attention span, impulsiveness, aggressiveness and tendency to self injury • Odd responses to sensory stimuli • High threshold for pain • Hypersensitivity to sounds or touch • Exaggerated response to light or smells • Fascination to certain stimuli

9. Associated features etc. • Abnormalities in eating e.g. limiting diet to a few foods or pica • Abnormalities of mood e.g. giggling or weeping for no reason • No sense of danger • Excessive fearfulness to harmless objects • Adolescents may become depressed • Seizures develop in about 25% of children usually in adolescence

10. Diagnosis • ‘a signpost, not a label’ Exley • No simple test • Multi-disciplinary team over a period of time and in several settings • Must show signs in all 3 areas • Early diagnosis preferable but difficult to be accurate under 18 months • Hearing test often undertaken to exclude deafness

11. DSM IV – Diagnostic criteria • 3 sections – A.B and C • Must display a total of six items from A, B and C with at least 2 from A and one each from B and C • Must be delays or abnormal functioning in at least one of the triad areas with onset prior to 3 years of age • The difficulties are nor caused by Rett’s syndrome of childhood disintegrative disorder

12. Asperger’s syndrome – diagnostic features • Severe and sustained impairment in social interaction • Restricted, repetitive patterns of behaviour interests and activities • No significant delays in language • No significant delays in cognitive development • Must not be any other type of autism or schizophrenia

13. Asperger’s • Later onset than autism • Motor delays or motor clumsiness may be noted in preschool years • difficulties in social interaction may not be noted until child is at school • It is then that ‘odd’ interests may be noted e.g. fascination with train timetables

14. Asperger’s • Adults may have problems with empathy and appropriate social interaction • Usually lifelong • Increased frequency of Asperger’s among family members of individuals who have the disorder

15. Childhood disintegrative disorder • Rare condition • Normal development until 2 yrs and then rapid regression i.e. later regression than autism • Loss of previously acquired communication, play, social abilities, cognitive and motor skills

16. Rett syndrome • Development disorder affecting girls • Normal development in first 12 months followed by period of rapid regression • Loss of purposeful hand movements – replaced by stereotypical hand movements such as hand wringing and clapping • Poor trunk or gait co-ordination • Loss of social engagement • Cognitive skills, receptive and expressive language skills are severely impaired

17. Atypical autism • Diagnosis by exclusion of other ASD • Symptoms of autism may only be partially present in number or degree or where the age of onset was over 36 months • Very similar behaviour patterns to typical autism

18. Intervention approaches • Many different approaches each stemming from a particular belief e.g. biological versus behavioural • No one approach works for all children • Elizabeth Newson 1979 believes it is important to address ‘the whole nature of autism’ • Very important to check evidence base

19. TEACCH – treatment and education of autistic and related communication handicapped children • Whole life approach – began in 1966 in North Carolina • Requires that adaptations must happen in 3 areas of a child’s life – home, school, and community • Based on structured teaching • Physical structure • Schedules • Work systems • Visual clarity

20. Musical interaction • Aim is to engage each child in the process of interaction • Based on the way parents naturally play with children • Emphasis is on helping the child develop communicative intent • Focuses on what the child can do and builds on this • Non - invasive

21. PECS – picture exchange communication system • Developed in the USA in 1985 • Aim is for children to acquire key communication skills especially initiating communication in a social exchange • 6 distinct phases of teaching • Combines knowledge from ABA and SLT

22. PECS continued • Initially 2 adults needed using a strong motivator for the child • Children can go on to develop spontaneous speech • Increase in communicating leads to a decrease in frustration • Can be used from 14 months and can be used with adults • Can be used with other disabilities also

23. The Earlybird project • Set up by the National Autistic Society in Barnsley • Early intervention key • Working through parents vital • Aims to put parents in control, empower parents, support parents and assist parents in establishing good practice in managing their child at an early age • 6 families at a time for a 6 week programme – 3 hour sessions • Day time training sessions plus home visits

24. Applied behavioural analysis – ABA, (Lovaas) • Should start before child is 42 months • Intensive interaction for up to 40 hours a week • Delivered by all significant people who work with the child • Periodic and objective assessment, reinforcement, skilled staff • Most of research done by Lovaas himself • Much criticised for having too narrow a focus and for being inappropriate but parents seem to like it

25. Other approaches • Intensive interaction • SPELL • Son-rise program (option approach) • Daily life therapy (Higashi) • Auditory integration training • Diet (Opiod Excess Theory) • Secretin • Irlen

26. Choosing an approach – questions to ask • On which theory of autism is the approach based • How long has the approach been used • Was the approach specifically designed for children with autism • What does it involve • Who is involved in delivering the approach • How is the approach introduced to the child • Is it invasive to the child

27. Questions to ask • What skills does the approach aim to develop in the child • Has the approach been evaluated • Can the approach be used with other approached • To what extent will it effect the family lifestyle • How much does it cost • Home based? School based? Or both? • How will you know it is successful • What happens if it doesn’t work

28. General guidelines for the management of ASD- communication • Speak clearly and directly using simple words and language • Try not to use metaphorical speech or exaggeration – remember the child will take your words literally • Use songs and rhymes, especially those to which the child has previously shown a response. Encouraging clapping and beating a rhythm. • Inanimate v animate object confusion

29. Management – social interaction • Encourage the child to meet other children regularly • Encourage child-adult interaction and then child – child interaction • Repeat games that the child enjoys • Music in a group

30. Management – safety and physical issues • A child with ASD has a lack of natural caution – vulnerability • Be vigilant e.g. hot and cold water and food • Remember the child may display inappropriate behaviour in public such as approaching strangers and wandering off • Use the child's preference for routine to improve skills such as toilet training, dressing etc. • A firm, caring, consistent approach is important

31. Implications for the future • A child will continue to need considerable support through out school • The condition can be managed and the effects minimised but not cured – ASD is for life • More research!

32. Case study • Adam • What other signs might have indicated Adam’s ASD earlier? • How could you help Adam begin to control his ritualistic behaviour?

33. Including a child with ASD in the pre-school or classroom • Suggestions?

34. Fragile X syndrome (FRAX)

35. Introduction • Relatively recently discovered condition of genetic origin • Most common inherited cause of learning disability • May also be some physical characteristics • Occurs in approx. 1 in 3600 males and 1 in 4000 to 6000 females • Features of disability less in females • Blood tests available but only after a child has failed to develop in a ‘typical’ way • Term ‘fragile’ does not mean that the child is sickly or ill

36. What happens to cause FRAX? • Passed on by the X chromosome (boys XY, Girls XX) • If a girl has a fragile X, she will also have an undamaged X which is why the condition is less severe in girls • A damaged or fragile X looks different under a microscope – abnormality at the tip and appearing partially separated • Condition can be passed by unaffected male and female carriers

37. Development difficulties – learning difficulties • Usually present in both boys and girls, with boys being more severely affected • Severity ranges from mild educational delay to severe difficulties • Some features similar to autism

38. Speech and language difficulties • Usually present in all children with the condition • Language delay may be the first sign of a problem • Particular features are; • Word and phrase repetition, accompanied by up and down swings of pitch • Echolalia • Poor control of the rhythm on speech and inappropriate use of pauses • Comprehension difficulties

39. Behaviour and attention • Tantrums continuing after the expected development stage • Excessive response to stimulation • Overactivity/hyperactivity • Impulsive • Concentration problems • Anxiety – avoiding eye contact

40. Behaviour and attention • Short term memory problems but long term memory can be quite good • Mimicry – especially specific words • Ritualistic behaviour – likes routine and is distressed by changes • Repetitive behaviour – finger flicking, hand flapping, and hand biting can occur The severity can lessen as the child grows • The older undiagnosed child may be noticed as ‘badly behaved’, just lacking in concentration or appearing unco-operative at times

41. Physical characteristics and health implications • These physical features may not be present in all children and may not be noticeable until a child is older • Laxity of joints and muscles- late sitting and walking • Recurrent middle ear infections • A long narrow face with a prominent jaw bone • Epilepsy – 20% of children • Large testes in adult males

42. General care • Team-based, early intervention recommended • Emphasis on early speech and language therapy • Development will follow a similar pattern to any child but be slower • A child with FRAX can be routine dependant so a flexible and realistic care plan should be developed • Health problems are the same as any child

43. General care continued • May be strain on family if child is getting little sleep • Because child will tend to mimic – use a positive role model particularly for safety practices • The child needs to learn to be part of a group • Help the child to moderate behaviour with verbal reinforcement, praise and encouragement

44. General care continued • Remember the child's cognitive stage of development – do not expect him to take turns if he has not learned to share yet • Help the development of concentration by breaking down games/activities into small, achievable units • Sign systems may help e.g. Makaton

45. Ongoing management • Provide a distraction free area and keep noise levels low to allow for concentration • Ensure a calm, reassuring environment • Keep the child close to you but alongside you rather than facing you as eye contact can be threatening • Make sessions short – 10-15 minutes • Alternate quiet and energetic sessions • Use ‘time out’ as necessary

46. Ongoing management • Be consistent, clear and realistic • Tell the child what behaviour is unacceptable and reward positive behaviour • Be prepared to repeat instructions and check that the child understands • Use a visual approach to story telling

47. Ongoing management • Build the child’s self esteem with praise and encouragement for effort • Work to the child’s strengths • All staff should follow similar management approaches • Maintain good home liaison • Number work can be difficult but use of computers can be valuable

48. Case study • Jason