Autism and Socialising

1. Autism and Socialising Zarah Doyle CertHE, BPhil:SpEd,

2. Aims of this community talk

3. The Dance Trying to learn of the ever changing rules of the social world in the way which has been suggested for the autistic population must be like learning a complicated dance, when you do not know what dancing is, when you cannot hear the music and when just as you managed to imitate one step of your partner’s, you find that the dance has moved on, the rhythm has changed and so (perhaps) has your partner. (Jordan, R. 2015)

4. Unusual things I noticed about my son…. • Endlessly Pacing the floors barefoot, back and forth • Looking at objects through squinted eyes • Avoiding direct eye contact with me • Echolalia both delayed and immediate • Vocal stimming, humming, clicking • Wanted to eat everything in sight • Needed very little sleep • Rarely responded to his name • Very little awareness of danger, e.g. ran, climbed on anything • Hyper sensitive to some things and unresponsive to others

5. Impact on our family life;I was constantly asking questions and having things pointed out to me by friends and family. • Why is he behaving that way? • Why won’t he play with his brother? • How do we help him to engage with us? • How do we know where to begin? • How can we trust that the other people will know what he needs? • How can we help him to sleep so we can sleep?

6. Impact on our family life;Things that did not work well for us in the beginning.. • Going to family gatherings • Going to a mass of any kind • Santa visits • Family days out • Joining community clubs • Holidays and travel • Cinema trips • Cycling a bike • Table top activities • Any trips that were spur of the moment or out of the ordinary!

7. Our family life plan shifts focus • It’s no longer about those family fun days and crowded events • It’s not about him alone changing his behaviour to comply with everyone else's expectations • It’s living in the moment • It’s Igniting the spark • Using his interests to promote his confidence • Adapting our parenting styles that we had learned from our parents. • Finding new ways to connect • Acceptance • Understanding • The fight for everyone else to get IT

8. Things we have to get used to as the parents…. Coming to terms with a child receiving a diagnosis of ASD has a life altering impact on a family. The core differences in communication, social skills and intricacies of behavior and in many cases sleep disorders lead to an incredibly challenging and abnormal parenthood (Tekinarslan, 2018). This Photo by Unknown Author is licensed under CC BY-NC-ND This Photo by Unknown Author is licensed under CC BY-ND

9. From own agenda to social engagement

10. The importance of Early intervention The outcome of any child’s development Underlying Strengths Underlying Challenges Life Experiences

11. Temple Grandin: Kids have to be exposed to different things in order to develop. A child’s not going to find out he likes to play a musical instrument if you never exposed him to it…

12. Sense of self Self-esteem Self-image

13. What we did know for certain…. • He was fascinated with transport – trains, planes and automobiles • We knew he adored Pixar and most animation • He enjoyed swimming • He enjoyed being outdoors • He adored animals • He found any repetition hilarious • He was generally a happy child until he wasn’t This Photo by Unknown Author is licensed under CC BY-NC-ND

14. A boy and his dog • How to show empathy • Social development • Sensory development • New experiences • Focus • Life cycles • Love • Routine • Independence • Self-esteem

15. Finding new ways of expressing himself 19th May 2017 (11 years old) • A drawing interest developed as soon as he began to self regulate • It has helped with sequencing • Fine motor refinement • Language and communication • Comprehension • Problem solving • Self confidence and self esteem • An expressive outlet 17 April 2014 (8 years old) 16th September 2017 6th January 2018

16. The importance of being Family Centred • All of the family can be involved in the articulation of the activities, to allow promotion of engagement within the family home. • The element of fun is injected into the home as this is predominantly about learning how to play. • “Family centred practice fosters family engagement, collaboration and decision-making, sees families as partners and focuses on family strengths in the processes of facilitating child development” (Sukkar, Dunst & Kirkby, 2016) This Photo by Unknown Author is licensed under CC BY-ND

17. Siblings • If children are fortunate enough to have siblings, they are automatically provided with an abundance of opportunities to practice social interaction. • Interactions are not always agreeable • Compromise skills can be learned • Shared interests can be a bonding strategy • Accepting others have a say in things • Experiencing relationships in the most natural of settings. • Understand a persons behavior can impact upon others • Siblings understand the need for moment to moment interactions and are more accepting of his differences. • They advocate for one another in different situations

18. Being Family Centred • ‘Children’s social competence provides a necessary foundation for school readiness and academic achievement’ (e.g., Hemmeter & Ostrosky, 2003; Raver, 2002) • ‘Family members of children with ASDs need to consider supporting social skill development and emotional regulation, since they can affect all areas of learning’ (Zins, Bloodworth, Weissberg, & Walberg, 2004). • Comic strip conversations can help children with ASD to improve their perceptions of social situations (Pierson & Glaeser, 2007)

19. Teaching Social Rules • In our house comic strips worked a treat for teaching daily routines such as getting ready for the day, homework, showering, bedtime • I had to make them really interesting to him as your typical board maker style visuals he completely ignored • Teaching reciprocity • Making and interpreting social signals • The use of digital story telling • Comic Strip Conversations™ (Carol Gray 1994) Useful websites; Storyboardthat.com Pixton.com

20. Cognitive theories on autism:  • Theory of Mind: Understanding thoughts and emotions  • Executive functions: Problem solving abilities, Planning, Impulse control, Attention • Central coherence: The ability to see the big  picture and not losing yourself in details  This Photo by Unknown Author is licensed under CC BY

21. Despite all progress, communication and social skills are fluid and continue to grow in complexity

22. A Statement such as ‘You be a good girl and mummy will be happy’ is totally wasted on me, as I couldn’t care whether mummy is happy, sad or indifferent… In my case, it was necessary that my parents found other ways of motivating me to learn.. (Blackburn, 2001) Happy Mummy Be Good This Photo by Unknown Author is licensed under CC BY-NC-ND What does ‘be good’ even mean?

24. Creating an atmosphere to develop positive self concept • Be supportive rather than threatening • Offer a structure where reasonable demands can be made • Be trustworthy, follow through on promises • Provide freedom to make decisions so they can develop faith in their own judgement • Acceptance and value for who the person is. • Do not make individual disown their feelings as a condition of their worth or acceptance. • Explain that although we understand these feelings they cannot be acted upon due to distress of others • Give positive feedback • Allow to make mistakes without penalty

25. Caetextia (from the Latin word caecus, meaning "blind" and contextus, meaning "context") • To interact with the environmental surroundings is one ability, referred to as ‘external context’ (Vermeulen, 2014), however, the aptitude to reciprocate a social interaction with another person is entirely another challenge. • The ‘internal context’ encompasses personal states such as; emotions, memories, concepts, arousal and expectations. • This is not to say that the processes cannot be learnt. It is inefficiencies as opposed to inabilities. • Jordan (2012) maintains that a transactional approach like weaving the threads of social interaction is essential in facilitating the learning of this process.

26. Understanding others • We are bonded into groups by the way we recognise ourselves as a part of the human race. • How we identify with others • Learn to control, cooperate and collaborate • Distinguishing between people and objects can be difficult from infancy of an autistic person. • Developing a sense of oneself having an effect on the world • Awareness that others have their own selves (Theory of mind)

27. Introduce the child/teen to the pneumonic ‘PATHS’. • Introduce the pupil to the pneumonic ‘PATHS’. • Prepare ahead – keep personal facts of information • Ask yourself what you are going to • Time it right • Say Hello • Use appropriate Non-verbal Signals This Photo by Unknown Author is licensed under CC BY-NC

29. Tony Attwood identifies these key social behaviours: Entry Skills: How the child joins a group of children and the welcome they provide for children who want to be included in their activity. Assistance: Recognising when and how to provide assistance as well as seeking assistance from others. Compliments: Providing compliments at appropriate times and knowing how to respond to a friend’s compliment. Criticism: Knowing when criticism is appropriate and inappropriate, how it is given and the ability to tolerate criticism. Accepting Suggestions: Incorporating the ideas of others in the activity.

30. Tony Attwood identifies these key social behaviours: • Reciprocity and Sharing: An equitable distribution of conversation, direction and resources. • Conflict Resolution: Managing disagreement with compromise, and recognising the opinions of others. Knowing not to respond with aggression or immature mechanisms. • Monitoring and Listening: Regularly observing the other person to monitor their contribution to the activity and body language. Their own body language indicating interest in the other person. • Empathy: Recognising when appropriate comments and actions are required in response to the other person’s circumstances and the positive and negative feelings of others. • Avoiding and Ending: The appropriate behaviour and comments to maintain solitude or end the interaction.

31. Why are high quality social skills interventions crucial for the autistic population? • Keonig & Scahill (2010) found that social skills challenges do not remit but become more devastating with age as social environments evolve and become more complex. • Children in inclusive settings are often more rejected and isolated yet not given the skills to succeed. • Social skills differences and misunderstandings contribute to academic and occupational underachievement and later mood and anxiety problems.

32. What does the research say? • There is a lack of established common definition of what comprises of social skills • There is great difficulty in helping children generalise techniques to other settings • Lack of conducting long-term follow up to determine if an intervention had an effect on eventual outcome of a person • Supporting Autism effectively means we need a 24 hour curriculum meaning teachers, parents and professionals need to be on the same path

33. What should parents be asking? • Is there manualised evidence based curriculum? • Are needs being addressed specifically? • Is generalisation to real-life settings an integral part of the program? • Does the group leader assess each members needs before inclusion into a group? • Do they have plans to assess effectiveness of group? • Do they assess satisfaction with the service at the conclusion? • Is the group of sufficient intensity to be effective? • Are interventions being delivered across a number of environments such as playgrounds, lunch areas, classrooms rather than professional offices?

34. How can the field of social skills intervention move forward? • We need parent training models to improve generalisation and to make intervention available for younger children • Programmes that address comorbid disorders (e.g. anxiety, depression) • Interventions for children under six whose brains have greater plasticity • Need-specific programs that can differentiate between those who need very basic versus those who need more advanced skill development • Consistent use of measurements in schools and community programmes to ensure specified goals are being met

35. There is an extensive and ever changing list of environments and contexts that a young autistic child may find challenging. • This is not to say that he/she will never attend to these activities, just that they are premature at his/her stage of development and they must be explicitly taught how to cope in a confusing world. • We can help through creating opportunities to allow the child to practice, experience and engage with the world. • Promoting parenting skills, self-efficacy, reducing parental stress and allowing for participation within the community are essential for families of children with additional needs (Sukkar, Dunst & Kirkby, 2016). This Photo by Unknown Author is licensed under CC BY-SA-NC

36. If I could go back in time to give myself some words of wisdom, I would say; • Forget the unsolicited advice for a while and focus on your son. • Bring yourself to the realisation that you already know what to do.  • Give yourself time to accept what you cannot change and know that your boy is still the same, your love for him is the same.  • Spend time alone with him and see where his strengths and challenges lie. • Few professionals will tell you anything you did not already know, they can make it official and get the supports but they can not tell you how to love and feel about your child. 

37. Important points for parents to know starting out • Your child is not a label, see past this. See their personality and enjoy them for who they are.  • It may take time for you to reach this place but when you do that fog will lift, little by little and you can strive to helping them to achieve their goals.  • Take the reigns and move forward when you're ready, surround yourself with like minded people, accept support and friendship.  • Look after yourself, it is easy to advocate for someone you love and often the parent is too busy being the carer and begin neglecting themselves. Trust me you'll need your strength!

38. How far we’ve come… • Flying and holidays • Santa visits • Family gatherings, weddings, communions and birthdays • Going to the cinema • Cycling his bike • Rollercoasters • Theme parks • Trinity College Dublin • SLEEP!!!!!

39. Anthony Ianni: At the end of the day, we don’t dream our lives…WE LIVE THEM!

40. Further reading • https://www.autismeducationtrust.org.uk/resources/t4t/teaching-social-rules-explicitly/ • Comic Strip Conversations™ (Carol Gray 1994) • Jordan, R., & Guldberg, K. (2015). Special Educational Needs of Children with Autism: Social and Emotional Understanding. Birmingham: University of Birmingham. • Vermeulen, P. (2014). Context Blindness in Autism Spectrum Disorder. Focus On Autism And Other Developmental Disabilities, 30(3), 182-192. doi: 10.1177/1088357614528799 • White, S. W., Koenig, K., & Scahill, L. (2010). Group Social Skills Instruction for Adolescents With High-Functioning Autism Spectrum Disorders. Focus on Autism and Other Developmental Disabilities, 25(4), 209–219. https://doi.org/10.1177/1088357610380595