Understanding Autism: The Impact on Emergency Situations

1. Staci Carr Ph.D. Candidate Virginia Commonwealth University Autism Center for Excellence Understanding Autism:The Impact on Emergency Situations

2. Learning Objectives • Explore and learn common characteristics of individuals with ASD including: social, behavioral, and communication. • Explore the “spectrum” of Autism with respect to functioning and age • Learn practical applications of strategies to assist in creating positive and productive interactions with individuals with ASD.

3. Key Components of ASD Primary and Secondary Characteristics

4. The Autism Umbrella Autism Asperger’s Syndrome Rett’s Syndrome PDD- NOS Childhood Disintegrative Disorder

5. The many faces of ASD

6. AGE • Toddlers • Early Childhood • Adolescence • Young Adulthood • Adulthood

7. “If you’ve met one child with autism, you’ve met one child with autism.” -Stephen Shore

8. Key Components of an ASD diagnosis • Deficits in Social Interaction • Deficits in Communication • Presence of Restricted, Repetitive, and Stereotyped Repertoire of Activities

9. Non-verbal Passive Highly Verbal Active Communication Social Behavior Simple Complex Autism ContinuumAutism Defies Generalization

10. Communication • What does it look like?

11. Tendency: Respond to others Eye gaze or gestures Brief turn-taking Perseverative interactions Weakness: Initiate interactions Combine eye gaze and gesture Reciprocal interaction Share with others Flexible interactions Pragmatic language Understanding non-verbal cues, gestures, eye-contact Interpreting language literally Perspective taking Interactions

13. Social Skills • What does it look like?

14. Tendency: Inappropriate Space, interactions, aloof, withdrawn Sensory sensitivities Anxiety Weakness: Infer emotional states Socioemotional

15. Secondary Characteristics

16. What parents wish everyone knew…

17. Behavior in Autism • Behaviors can be positive or negative • All Behaviors communicate • 5 Functions of Behavior • M- Medical • E- Escape • A- Attention • T- Tangible • S- Sensory

18. Summary of challenging behaviors • Destructive Behaviors • Aggressive, Self-Injurious, Property Destruction, Injury to others, Throw, Push, Harmful Behavior with Hands, Feet, etc. • Disruptive Behaviors • Tantrums, Loud Noise/Screaming/Crying, Running, Repetitive Noises, etc., Talking Out, Negative Comments • Interfering and/or Irritating Behaviors • Self-stimulation, Repetitive and Perseverative Speech—Questions, Argumentative, Poor Task Completion

19. How individuals with ASD processes his/her environment • Difficulty conceiving that others have their own thoughts • Difficulty understanding what others are thinking • Always tries to follow own agenda—not others • Upset by minor changes—not minor for the individual

20. Dealing with Problem Behavior • Know sequence of behaviors that results in increased anxiety, frustration, stress (behavior chain) and emotional episode, tantrums, out of control behavior • Intervene before escalation reaches half-way point • Allow to calm, then return to activity • If loses control, allow ―melt down‖ to run its course • Avoid excessive, talking, questioning, handling

21. Secondary Characteristics: Sensory System Differences • People with ASD typically have a varying pattern of hyper (over) and hypo (under)-sensitivity to sensory stimuli • Strong sensory experiences trigger flight, fight, or fright • The person may avoid such experiences • Weak sensory experiences trigger a craving for sensory information • The person may seek such experiences

22. Behavior Challenges • Self Injurious Behavior • Aggression Towards Others • Darting/Wandering/ Escape • Excessive Self Stimulatory Behavior

23. Mental Health Diagnoses • Higher rate of depression • Higher rate of anxiety disorders • Higher rate of other co-morbidities

24. Practical Strategies

25. On Scene EMTs, Fire and Police Responding • Do's & Don'ts • Meltdown of the Individual • Restraining and Retaining • At the Emergency Room

26. Do: • One of the most important skills a person can have is the ability to be calm and comforting in a crisis or “meltdown” situation. A comforting adult may: • talk softly and share encouraging words • repeat a calming phrase • or simply keep one’s own body relaxed (Kluth) • “The more you try to control the situation, the less control you will have!”

27. What Doesn’t Work! Social situations without guidelines Overestimating their control and understanding due to their intelligence Noise Getting upset when they get upset Getting offended with their social limitations Overestimating their receptive language skills

28. What Works Visual Supports – modify so they blend in (written format) Consistent routines Providing ways to modulate sensory needs Help them see others’ perspective Plan and warn about transitions Use special interests to motivate, but then move them on through those interests to other areas

29. Basic Supports • Visual Supports: anything we see that enhances our communication and understanding • Can include: body language, natural environmental cues, traditional organizational tools, etc. • Broad category: visual schedules, choice boards, task completion/skill development

30. Visual Schedules are … • Used to increase structure and predictability • Can be used to, remind about daily routines, help break tasks down into small units • For younger children and those with limited language skills, use pictures or icons

31. AND… • For individuals who can read, use written descriptions with or without pictures to regulate social behavior \ • Reduce stress and/or redirect if student is escalating

32. Visual Supports

33. Things to Remember…(Debbaudt 2005) • Personal Space: Be aware that your personal space may be invaded, or that the individual may NOT respond well to you invading theirs. • Speak calmly and softly. • Speak in direct, short phrases such as: “Stand up now.” or “Get in the car.” • Avoid slang expressions, such as: “What’s up your sleeve?” or “Are you pulling my leg?” • Allow for delayed responses (10-15 seconds) to your questions or commands. May even be as long as 30 seconds.

34. Repeat or rephrase after a non response of 20-30 seconds. • Consider use of pictures, written phrases/commands, computer images. • Use minimal gestures for attention; avoid pointing or waving. • Examine for presence of medical alert jewelry or tags, or an autism identification card to get name, address, etc. • Model calming body language (such as slow breathing and keeping hands low)

35. Demonstrate the behavior you want the person to display (how you want them to sit, stand, lay, etc.) A person with autism may not react well to changes in routine or the presence of strangers, even a uniformed responder. Be prepared to use short directions. Officers should not interpret the person’s failure to respond to orders or questions as a lack of cooperation or a reason for increased force. Ask parent or others at the scene about how to communicate with and deescalate the person’s behavior.

36. Avoid stopping repetitive behaviors unless there is risk of injury to yourself or others. If person is holding and appears to be engaged with an inanimate object, consider allowing individual to hold the item for the calming effect. Evaluate for injury: person may not ask for help or show any indications of pain, even though injury seems apparent. Be aware that the person may be having a seizure (high incidence rate of seizure disorder) Be aware of person’s self-protective responses and sensitivities to even usual lights, sounds, touches, orders, and animals - canine or mounted patrol If possible, turn off sirens and flashing lights and remove other sensory stimulation from the scene (crowds, animals, etc.)

37. If person’s behavior escalates, use “geographic containment” and maintain a safe distance until any inappropriate behaviors lessen (Debbaudt & Legacy, 2005) Stay alert to the possibility of outbursts or impulsive acts Use your discretion. If you have determined that the person is unarmed and have established geographic containment, use all available time to allow the person to deescalate themselves without your intervention. If in custody, alert jail authorities. Consider initial isolation facility. Person would be at risk in general prison population. Each individual with autism is unique and may act or react differently. While these are helpful hints for interacting with individuals with ASD, they may not always work.

38. What are your concerns? • Search & Rescue: Effective Communication • Searching • Communication • Restraining • Entering & Exiting • Rescue from Heights

39. Searching • Where? • Favorite spot? Interest? • Park • Neighbor’s house • How to approach? • Remember the 25 helpful hints

40. Communication • Verbal or Non-verbal? • Do you have visual supports handy? • Tone of voice • Length of sentence • Body posture and personal space

41. Restraining • BE CAREFUL!!! • Hands off is the best idea • Do not try to STOP a “meltdown” • Block and redirect Unless…. • At risk of injuring self or others • Remember that many individuals with ASD do not like to be touched…

42. Entering and exiting Entering: • Calm, • Slow, • Low numbers (no need for show of force– may escalate the situation) Exiting: • Appropriate escorting, • Using visual supports for transitions, • Transition item

43. Rescuing from Heights • Many individuals lack a sense of danger • REMAIN CALM • Do not startle • Short directions with visual supports • Patience • Consider luring with a preferred or high interest item

44. Case Studies and Examples

45. David • High school student with Asperger’s syndrome • Very bright and gifted in math and computers • Really scared of weather although knowledgeable about it and can tell you all about fronts, storms, etc. • Tornado hits the area while he is at Target and he becomes very upset and abusive to mom while in the store. Manager calls Police • What do you do?

46. Ellen • 11 year old girl with autism • Does not use words to communicate • Teacher tells you that she does not handle transitions well • Has a seizure at school and needs to be taken to the ER • What do you do?

47. Questions?

48. How to reach me… Staci Carr Virginia Commonwealth University Autism Center for Excellence 1314 West Main Street Richmond, VA 23284 secarr@vcu.edu 804-828-1247 www.vcuautismcenter.org