SOLVING THE PUZZLE: Service to Kids and Teens With Autism RILA Conference May, 2010

1. SOLVING THE PUZZLE:Service to Kids and Teens With AutismRILA ConferenceMay, 2010

2. Introduction: A Few Pieces of the Puzzle Barbara Klipper The Ferguson Library Stamford, CT

3. The Incidence THE LATEST DATA: Published on Oct. 2009 in the journal, PEDIATRICS: About 1 in 100 three-17 year olds (or 673,000 US children) (from a parent-reported sample of 78,037, part of the 2007 National Survey of Children’s Health) The Numbers Are Going UP!

4. Autism Community Saying: • “When you’ve met one person with Autism, you’ve met… one person with Autism.” • Autism, Asperger’s Syndrome and other conditions are known collectively as Autism Spectrum Disorders (ASD). • There are many different way that these developmental disabilities manifest, but there are common elements present in all ASDs.

5. Think about PLAID • To understand the spectrum idea, think about PLAID. • All plaids have stripes of varying widths crossing at right angles You can have a bright garish plaid or a more subtle plaid, but they are both plaid.

6. The Elements of ASD: Impairments in: • Language and Communication • Social Skills • Behaviors (Repetitive or Restrictive) And often there are: • Sensory Processing Problems Like plaid, these can be subtle or glaring…i.e., can range from nonverbal to someone who just doesn’t get idioms.

7. Language and Communication • May be nonverbal or speak non-stop • May talk “at” you, not converse • May have strong decoding, limited comprehension • May be too loud • May speak in a monotone • May repeat what they’ve heard or read (echolalia) • May appear deaf (not respond to language) • May not understand idioms, abstractions, humor based on double meanings, hyperbole or sarcasm

8. Social Skills May not read emotions, facial expressions, body language or other social cues May have difficulty empathizing or adopting other’s point of view (theory of mind) May have little or no understanding of friendships, and possibly no interest May have little or no pretend play May not learn by imitation or emulation May not understand appropriate social distance or touch May not make eye contact May have difficulty turn-taking or sharing May not understand when a behavior or interest is socially inappropriate

9. Behaviors • A person with ASD may have strong, obsessive interests or a very limited number of interests. • Actions may be performed in a ritualized manner. • Stims (self-stimulatory behaviors like rocking or hand-flapping) may be used when upset.

10. Sensory Issues • May have motor planning problems • May have difficulties with balance • May have a poor sense of body in space • May be hyper- or hypo-sensitive to sensations (seeker or avoider) • May be unable to process auditory and visual input simultaneously • May be unable to block out background noise or other stimuli

11. What’s it Like? Turn to the person next to you. One of you is the speaker, the other is the listener. In a couple of sentences, tell your partner what you enjoyed most about the conference so far. Then, switch places.

12. Remember: All of these features of ASD make the world a pretty scary place. In order for kids, teens and adults with ASD to feel safe, predictability is needed in the environment. Frustration and meltdowns can occur when the world seems out of control.

13. What People With ASD Prefer to Read: • Preference for nonfiction • Among fiction, preference for fantasy fiction and/or graphic novels • Concrete stories (little or no use of abstractions or idioms)

14. Why These Preferences? Difficulties and delays relating to text comprehension: • Central Coherence: Getting the big picture and making a whole out of several parts • Theory of Mind: The ability to think about another’s thinking; perspective taking and empathy; understanding boundaries (emotional, social and physical) • Executive Functioning: Planning and organizing, flexible problem solving. The “absent-minded professor”.

15. Why Nonfiction? • Often has an explicit organization and sequence • Often provides visual support (tables, charts, photos and diagrams) • Little inference is required • Often related to an area of intense special interest

16. In contrast, consider fiction… • Plot often driven by the internal thoughts, feelings and desires of characters • Need to Infer, draw conclusions, predict • May include language chosen for its artistic value, not for clarity • After early readers, there are few visual supports • Often reflects the social milieu of its target audience (and is therefore just as confusing!)

17. Keep language simple and concrete Avoid idioms and multi-part directions Be concrete and positive…”please do this”, not “don’t do that”. Be predictable; describe what you are doing and will be doing Give warnings before transitions (like the end of computer time) Don’t insist on eye contact or “manners” • What Librarians Can Do: • Keep the preferences of people with • ASD in mind when choosing books

18. Other Ideas: Be willing to bend some circ policies; i.e. allow multiple renewals for favorite items Allow “sensory diet” items (gum, squeezeballs, etc.) If waiting is a problem, help kids with ASD before others Explain changes in the environment Provide visual supports in programs Minimize sensory stimulation (fluorescent lights are the worst) Provide quiet work areas or study carrels

19. Help the Parents: Provide books and other materials (like the Special Needs Center at the Ferguson Library) Discuss best times for library visits and provide guidelines for success (like the Ferguson Library brochure) Provide programming for their children Provide programming for parents and/or space for support groups to meet Most important: BE KIND AND WELCOMING!!

20. Program Possibilities: Sensory Storytime or other special storytimes for this population Guest speakers for parents on Special Needs Trusts, assistive technology, the I.D.E.A. etc. Integrate children and teens into your other programs (some of them are probably there already)

21. Programming for children (and families) on the Spectrum • Serving 2 main populations: • The child • The grownups: parents/caregivers Kiera Parrott Darien Library

22. The Grownups • Parents of children with ASD may feel: • Isolated • Frustrated • Embarrassed • Self-conscious

23. The Grownups continued… • Judged • Uncomfortable • Awkward

24. What can we do? • Keep the program (and ourselves): • Welcoming • Relaxed • Flexible

25. Before the Program…. • Speak to the parent/caregiver about their child- their needs, any triggers, special interests, etc. • While it is often impossible to tailor a program to each child, you can make some adjustments to make each family feel at ease.

26. For example….. • Child who might get very excited about trains (something you may not want to start with- since it may be difficult for that child to focus on anything else.) • Child who is very sensitive to sound. (you may want to adjust any musical portion of the program- choose soothing lullabys instead of egg shakers, etc…)

27. During the Program…. • Make a point of saying/listing the YESes • I do NOT expect their child to “sit still and listen”. • It is okay to walk around, explore the room. • It is okay to play with the toys, hide under a table or a blanket. • It is okay to bring snacks. • It is okay to get up and leave. It is okay to come back when and if you are both ready. • It is okay to make noise or movements.

28. In short,assure the grownups that: • Kids are not expected to enter “Storytime World”- rather, we are entering theirs. • There are no rules. It is simply a set aside time and space for their child to explore and interact on their own comfort level.

29. After the Program…. • Leave at least 15 to 20 minutes after the end of the program for grownups to chat, network, and exchange info.

30. The Children • May not want to enter room • May not make eye contact or interact with you • May immediately begin talking up a storm about their favorite subject(s) • May have a tantrum or a “meltdown” • May sit/hide in a corner • May roam around • May make noises • May make movements like hand-flapping or rocking • May do/say something you had not prepared for! 

31. What can we do? • Besides….being welcoming, relaxed, and flexible?? • Create an environment that allows the children to interact in a multitude of ways- with different textures, seating arrangements, places for exploration, quiet time.

32. The Room Setup:

33. Sensory Toys and Manipulatives

34. Tell (and Show) what will happen • Picture Cards (http://www.dotolearn.com/) • Giant Post-Its with numbers/pictures • For example: 1. Sing Songs 2. Listen to a story 3. Bubble Painting (or other sensory activity)

35. Remember: • Set up the room in the same way each time. • Build routine, familiarity. (If you don’t get to something on the list, that okay. Just let the kids know.) • Keep the books, songs, fingerplays, and any other activities simple. • Repeat! Repetition of a song or a book a few times in the same program is good!

36. Choosing Books • Chanting verses (Monkey and Me by Emily Gravett) • Rhyme (The Bus for Us by Suzanne Bloom) • Sensory stimulation (Have You Ever Tickled a Tiger by Betsy Snyder) • Photo-realistic (Tana Hoban, Margaret Miller)

37. Sensory Activities • Bubble Painting • Shaving Cream Explorers • Rice Treasure Hunt • Coloring Upside-down • Fruit/Veggie Stamping • Texture Coloring • Play-Doh • Blowing Bubbles • Finger Painting

38. Not ready to do a program for kids on the spectrum? • Integrate sensory activities into the programs you already do. • Use picture cards or other visuals to let kids know what will happen and in what order. • Relax the rules in ways that work for you and your library. • Reach out to families who may not be attending programs and invite them to give it a try!

39. Sensory Storytime at The Ferguson • Repetition and predictability • Visual supports using Boardmaker Software • Sensory activities include: • Weighted bean bag march • Oral stimulation song • Balance beam • Theraband stretch to song • Reading multiple board books • Book-related sensory activity

40. Music, Movement and Literacy On the Balance Beam MousePaint activity Hello “Shirt Song” • Mix of kids with disabilities and “typical” kids • Multiple sessions allow for skill development • Parents are involved We Read Together

41. Teens With Autismby Susan HansenWest Hartford Public Library A teen with autism is, above all else, (forgive me for using a 4-letter word) A TEEN!

42. Teens and Libraries • Teens don’t always feel welcome • Do you have a Teen Room? Teen Area? Teen Oubliette? Teen web page? • Teens want to be treated with respect (even when they are skateboarding in the stacks.) • Teens want to trust you to trust them.

43. Teens are moving towards Independence They are struggling with: • social skills • communication skills • self-management skills • self-advocacy skills. Not to mention Teens with autism are really struggling with all of these things!

44. Be Flexible • Practice mental yoga. • The biggest barrier to teens with autism having a successful library experience is in your mind. • “Tear down that wall!”

45. Programs for teens with ASD • The most successful teen programs have STRUCTURE – LOTS OF STRUCTURE! • Make a plan and stick to it. • Give out guidelines ahead of time. • Don’t try to prepare for everything that might go wrong – you can’t

46. Programs that worked • Movie Nights • Video Gaming nights • “Non-competitive” competitions • Teen advisory input • Improv • Origami did NOT work!

47. Stress-buster Supplies • Mint gum • Squeeze balls of varying strength • A quiet place • Room to pace • “Sandmeisters”

48. Goal: Make All Teens Feel Welcome Think of teens with autism as being part of their own unique culture. Help them feel welcome in your culture. From Englishman in New York: If manners maketh man as someone saidThen he’s the hero of the dayIt takes a man to suffer ignorance and smileBe yourself no matter what they say --Courtesy of Sting

49. Déjà vu: What Can Librarians Do? • Keep language simple and concrete • Avoid idioms and multi-part directions • Be concrete and positive • Be predictable • Give warnings before transitions • Don’t insist on eye contact or “manners” • Rephrase don’t repeat • Show don’t tell • Assume nothing!

50. My Son’s Contribution to this Conference Q: How do you tell the difference between a neurotypical teen and a teen with autism? A: A neurotypical teen will walk up to your desk, stare at the clock on the wall behind you for a few minutes and then ask “What time is it?” A teen with autism will walk up to your desk, stare at the clock on the wall behind you for a few minutes and then ask “Why haven’t you helped me yet? I’ve been standing here for 2 minutes and 43 seconds.”