Autism Spectrum Disorders

1. Autism Spectrum Disorders Introductory notes for the development of an effective support service

2. 1911 Bleuler coins ‘autism’ from the Greek for self: ‘autos’ 1940s Kanner identifies traits such as aloofness, rigidity of routine, repetitiveness, anxiety Asperger identifies similar traits in adolescents Bethelheim wrongly infers mental illness 1964 Rimland identifies a neuro-behavioural condition 1994 Autistic Spectrum Disorder (ASD) is defined as a ‘pervasive developmental disorder’ History of the autism label

3. Myths about ASD • Everyone with ASD has a special talent • Everyone with ASD is a potential genius • Everyone with ASD is mentally retarded • ASD means no emotions or attachments • “Once autistic, always autistic” • “Confrontation must be avoided at all times” • Conversely, “All behaviours must be normalised” The truth is: Everyone is a unique human being

4. To social relationships To social communication To imaginative thought But the combination of impairments is individual And other characteristics are also common: sensory sensitivity, monotone voice, bowel problems and more The three main impairments

5. ASD ‘types’ or diagnoses • Autistic Disorder (classification) • Childhood Disintegrative Disorder • Betts Disorder • Asperger’s Syndrome • Pervasive developmental disorder: not otherwise diagnosed (a ‘typical’ autism) What counts is the actual behaviour, not the label

6. Hearing Genetic EEG (tumours) Metabolism MRI CAT scan These may augment understanding of ASD condition, or adjust diagnosis For example, some behaviours may be due to diet or hearing impairment, not ASD Potentially relevant medical tests

7. Causes of ASD (I) • Unknown… • But probably a mix of: • Genetic make-up • Environmental factors (eg: toxins, serotonin, viruses, possibly vaccines, etc)

8. Causes of ASD (II) • This mix of genetic and environmental factors then appears to affect the following: • Sensory nervous system - sensory sensitivities • The brain - problems understanding the world • Gastro-intestinal tract - bowel problems are common • Research continues - it is important to support & learn from research

9. Sensitivities to different senses often need to be explored Such sensitivities mayexplain behaviours, such as those opposite Very specific food choices (or is it an allergy?) Avoidance of noise and talk Minimal reactions to touch Not wanting to wear clothes Understanding behaviours (I)

10. How would you behave if your environment was physically painful, or made no sense? You might display some of the behaviours opposite. Don’t assume. Explore. Lack of eye contact and desire for own space Unusual body movements Not interacting or imitating Lining up objects / liking furniture to stay the same Tantrums and aggression Understanding behaviours (II)

11. Really get to know people’s issues Strike a balance between: desensitising the person - and changing or avoiding environments Make commonsense practical arrangements: Sunglasses or a visor Ear plugs or a walkman Padded chair legs At home, avoid fluorescent lights Sensory sensitivities

12. Pampering people’s autistic traits may avoid short term conflict but can greatly limit their quality of life and health People will often benefit from individual development plans with an element of challenge People should be challenged for Quality of Life and safety reasons – not to make them ‘normal’ It is essential that everyone is careful, sensitive, and well informed. To push or not to push?

13. There are many different variations “The right teacher is more important than the type of programme” Dr Temple Grandin Portage - home teaching Floor Time – join person’s world SPELL – approach of Nat Aut Soc TEACCH -approach of Aut Ind UK ABA – applied behavioural analysis PECS –picture exchange comm sys Social Stories And more… Treatments and Programmes

14. The S.P.E.L.L programmeA National Autistic Society approach • Structure • Positive approaches and expectations • Empathy • Low arousal (a measured approach to challenging and stretching people) • Links (involving and building on family and other relationships)

15. Applied Behavioural Analysis • Understanding and shaping people’s behaviour • Exploring people’s environment and experiences • What happens before a behaviour • What happens after a behaviour • Keeping records and looking for patterns ABA is an essential tool in any programme

16. P.E.C.SPicture Exchange Communication System • A system for developing initial understanding of language by using pictures of items and rewarding appropriate use • For example, a request for a drink using a picture of a drink is rewarded with a drink • A range of courses and materials are available for purchase

17. Social Stories are relatively short, straightforward descriptions of social situations, specifically detailing what an individual might expect from the situation and what may be expected of him. They describe the events and rules which usually apply when (for example) shopping They help to overcome people’s problems in understanding the world Social Stories

18. Professions: Psychology Speech Therapy Occupational Therapy Technologies: Assistive (Environmental) Technology Information Communication Technology Specialist inputs

19. Assistive Technologies • Movement Sensors • Floor Sensors – prone alarms • Staff pagers – prone alarms • Flood sensors • Heat / height controls, inside and outside • Bed sensors

20. The holistic nature of ASD • No single response will suit all or any • Individualised responses are needed • But with some common patterns of some needs: • Communication impairments • Sensory sensitivities • Socialization sensitivity • Rhythms and routines etc

21. Get to know the person Past & present Important relationships Likes & dislikes Rhythms and routines Skills & potential Health Dreams & aspirations Plan together Build on Care Plans Optimise participation Real communication Turn goals into actions Be focused & consistent Responsive & respectful Celebrate achievements Individual Support PlanningCartrefi Cymru’s person-centred approach

22. Enabling people to have ties and connections • Identify useful activities and opportunities which can connect to the person’s own likes and wants • Identify the information and skills they need • Help others to be understanding and accepting • Develop safety skills and “getting around” skills, maps etc • Promote community participation in all its forms – from work and learning to leisure and relationships

23. Any comments or suggestions? Email us: enquiries@cartrefi.org