Caring for the Sick or Injured Child with Autism

Transcription

1 Caring for the Sick or Injured Child with Autism Terri Cooper Swanson, Ph.D. Pittsburg State University Wednesday, April 29, 2015 Autism Certificate Coordinator Pittsburg State University Terri Cooper Swanson, Ph.D. Distance Learning Coordinator TASN-Autism & Tertiary Behavior Supports Terri Cooper Swanson, Ph.D. 1

2 Visuals shared in this presentation and other resources will be shared through Google Drive till May 8, YsmGTWkx2Z3dPb3lyRnc&usp=sharing autism or autistic disorder Asperger syndrome or Asperger s disorder childhood disintegrative disorder(cdd) pervasive developmental disorder - not otherwise specified(pdd-nos) American Psychiatric Association, 2013 Terri Cooper Swanson, Ph.D. 2

3 Triad of Characteristics Communication Social Behavior Common Characteristics Communication May fail to initiate or sustain a conversation May have poor receptive (understanding of verbal language) and expressive skills (ability to effectively communicate) May echo words (echolalic speech) May try to communicate through behavior Social May be less responsive to social cues, eye contact, or smiles Difficulty with joint attention Difficulties in using and understanding both verbal and non-verbal language (Aspy& Grossman, 2012; Hudson, 2006; Myles, Hubbard, Swanson, Schelvan, & Simonelli, 2007) Terri Cooper Swanson, Ph.D. 3

4 Common Characteristics Behavior Thrive with predictability and routines (change can be difficult) May have areas of interest that are highly focused (special interests) May display unusual and repetitive movements of the body Stimming Hand flapping, finger flicking, rocking, humming, counting Sensory May be hypo- or hypersensitive to certain sensory experiences Touch, lights, sounds, smells, etc. Typically have a strong visual sense (Aspy& Grossman, 2012; Hudson, 2006; Myles, Hubbard, Swanson, Schelvan, & Simonelli, 2007) Common Characteristics Cognition Varied intelligence Verbal ability does not necessarily match intelligence Literal or concrete thinkers Emotional Vulnerability May act 1/3-2/3 their age Have a difficult time recognizing and understanding other people s perspectives Medical & Biological Factors Comorbid conditions (i.e., seizures, anxiety, depression, ADHD, OCD, Tourette s syndrome) Allergies (food and environment) Take multiple medications (for co-existing conditions, attention, anxiety & behavior) (Aspy& Grossman, 2012; Hudson, 2006; Myles, Hubbard, Swanson, Schelvan, & Simonelli, 2007) Terri Cooper Swanson, Ph.D. 4

5 IN CASE OF EMERGENCY! CHILD WITH AUTISM MAY When a non-routine or unexpected healthcare emergency occurs, how might a child with autism respond? Anxiety - increased vocalizations, stimming, pacing, etc. Elopement Tantrum / Self-injury / Aggression Perseverative speech repeat questions, words or phrases Delayed response or no response Shutting down Refuse help Adapted from Lawrence (2014) Terri Cooper Swanson, Ph.D. 5

6 Children with autism should have access to the following during routine and emergency healthcare procedures: Patient healthcare professional(s) Family member or caregiver support A way to communicate Visual supports to aid in their understanding of what is occurring and what is expected A quiet and calm area for waiting Preferred and calming items Patient Healthcare Professional One person the child can orient, relate, and rely on for structure, information and transitional support (i.e., nurse, social worker, child life specialist) Familiarized with the common characteristics of Autism Operate on Autism Time Twice as much time, half as much done. Slow down Talk slower Use concrete language Hudson, (2006); Autism Time adapted from Myles, Adreon& Gitlitz(2006) Terri Cooper Swanson, Ph.D. 6

7 Family Member or Caregiver Communication Passport Accident & Emergency Provides pertinent information related to: Healthcare needs/concerns How the child communicates What they do when stressed How do you know if they are in pain Strategies that work for that child Advocate for the child when they cannot Act as an interpreter Sarah StancerA & E Sister (2009) A Way to Communicate In stressful situations the child with autism will have a decreased ability to communicate effectively Have alternative means available for communication Just because I cannot speak, does not mean I cannot hear, or that I don t have something to say. Terri Cooper Swanson, Ph.D. 7

8 A Way to Communicate AAC: Alternative Augmentative Communication If the patient owns an AAC device this is their way of expressing themselves Ask the patient or caregiver to show you: How the device works If they have a page on their device related to medical information What type of questions they can answer so you can ask the right kind of questions Yes/no Choices (how many) Open ended A Way to Communicate The healthcare setting should provide simple forms of communication boards (i.e., printed paper, laminated for durability) so that the child with autism has alternative means of communicating if needed. Choice boards Communication board How they are feeling Making a request Terri Cooper Swanson, Ph.D. 8

9 Choice Boards YES NO What hurts? Communication Boards Developed by Jane Goetz Terri Cooper Swanson, Ph.D. 9

10 Communication Boards Visual Supports Individuals with autism are typically visual learners and processors. Use visuals to support their understanding of verbal information Terri Cooper Swanson, Ph.D. 10

11 Why do we want to present information visually? When we present information VERBALLY, the words are available for a brief moment. When we present information VISUALLY it can be there for AS LONG AS THE INDIVIDUAL NEEDS IT. Visual Supports What they look like Objects Photographs Line drawings Written word Combination Types Visual schedules & routines Social narratives Terri Cooper Swanson, Ph.D. 11

12 Visual Schedules & Routines Visually tells the child with autism what they will be doing during their appointment Child has a way to manipulate the schedule to indicate finished Pull off Finished pocket Cross off/check list May show 1-2 items at a time, 1 hour, ½ day or whole day Healthcare professional will provide verbal information about the child s appointment and refer to the visual schedule For each routine or procedure that needs to be broken down into even smaller steps provide verbal and visual explanation prior to the procedure Shea & Mesibov, 2014 From Do2Learn First, Then schedule from Lesson Pix created by Susan Collins Terri Cooper Swanson, Ph.D. 12

13 Social Narratives Social narratives are visually represented stories that describe situations and appropriate responses or behaviors Familiarize the child with expected routines and behaviors Decrease anxiety Provide them to the family ahead of time to familiarize the child with what to expect Read them prior to procedures Terri Cooper Swanson, Ph.D. 13

14 Social narrative created by Peggy Lawrence The social narrative can be related to the schedule Terri Cooper Swanson, Ph.D. 14

15 What if I don t have visuals? Establish yes/no communication Use a calm voice Use gestures and pointing Refer to objects Use firm touch Say what you are doing Use short sentences Show on yourself or someone else first A Quiet or Calm Area to Wait During stressful situations the person with autism may have increased anxiety, may shut down or may even have a tantrum (self-injury or aggression). This may be due to: Not understanding what is occurring Not feeling well Being overstimulated (sensory issues sounds, light, touch, balance) Terri Cooper Swanson, Ph.D. 15

16 A Quiet or Calm Area to Wait Providing a quiet or calm area to wait will Give them the space and privacy they need to Stim or pace (this may be relaxing) Make vocalizations Decrease the social/communication demands of a populated waiting area Give them some control over their environment (i.e., sound and lights) Give them space to pull themselves together before they need to interact with healthcare workers Preferred and Calming Items Allow the person with autism to have access to their preferred items (i.e., Play Station Vita, Nintendo DS, ipad, books, etc.) These items can help them wait for long periods of time and can be used to motivate (i.e., first take your medicine, then play on ipad) Provide access to calming items White noise (fan or white noise machine) Weighted blankets or weighted toys Blanket, sheet, pillows Rocking chair Calming music (slow instrumental, classical) Terri Cooper Swanson, Ph.D. 16

17 TASN-Autism and Tertiary Behavior Supports Webinars (Training Calendar and Training on Demand) Visuals (Free Classroom Materials) Suggested modules about autism: Autism and medication Cognitive differences Language and communication Restricted patterns of behavior, interests, and activities Sensory differences Free Online Modules Suggested modules about strategies Rules and routines Social narratives Structured work systems and activity organization Transitioning between activities Video modeling Visual Supports Terri Cooper Swanson, Ph.D. 17

18 Hudson, J. (2006). Prescription for Success: Supporting Children with Autism Spectrum Disorders in the Medical Environment. Shawnee Mission, KS: Autism Asperger Publishing Company. Resources 10 Ways to prepare your special needs child for a hospital emergency 6/10-ways-to-help-prepare-your-specialneeds-child-for-a-hospital-emergency-visit/ 7 things you don t know about a special needs parent Terri Cooper Swanson, Ph.D. 18

19 Resources Play Doctor (In Spanish) /06/112-sos-botiquin-jugando-a-losmedicos.html Free & Low Cost Hospital cards procedures/index.htm Print & Go for Doctors fordoctors/index.htm References Aspy, R., & Grossman, B. G. (2012). Designing comprehensive interventions for individuals with high functioning autism and Asperger syndrome: The Ziggurat Model Release 2.0. Shawnee Mission, KS: AAPC Publishing. Baron-Cohen, S. (1997). Mindblindness: An essay on autism and theory of mind. London: MIT Press. Buron, K. D. & Myles, B.S. (2014). Emotional regulation. In K. D. Buron & P. Wolberg (Eds.) Learners on the autism spectrum: Preparing highly qualified educators and related practitioners ( ). Shawnee Mission, KS: AAPC Publishing. Frith, U. (1991). Autism and Asperger syndrome. Cambridge, UK: Cambridge University Press. Terri Cooper Swanson, Ph.D. 19

20 Henry, S. & Myles, B. S. (2013). The comprehensive autism planning system [CAPS] for individuals with autism spectrum disorders and related disabilities: Integrating evidence-based practices throughout the student s day (2nd ed.) Shawnee Mission, KS: AAPC Publishing. Hudson, J. (2006). Prescription for Success: Supporting Children with Autism Spectrum Disorders in the Medical Environment. Shawnee Mission, KS: AAPC Publishing. Myles, B.S., Adreon, D. & Gitlitz, D. (2006). Simple strategies that work! Helpful hints for all educators of students with Asperger syndrome, high-functioning autism, and related disabilities. Shawnee Mission, KS: AAPC Publishing. Myles, B.S., Hubbard, A., Swanson, T. C., Schelvan, R. & Simonelli, A. (2007). Autism spectrum disorders. In E. Meyen and Y. Bui (Eds.), Exceptional children in today s schools: What teachers need to know ( ). Denver: Love Publishing Company. Sarah Stancer A & E Sister. (2009). Communication passport: Accident and emergency. Reading, UK: Royal Berkshire NHS Foundation Trust. Shea, V., & Mesibov, G. B. (2014). Structured teaching and environmental supports. In K.D. Buron & P. Wolberg (Eds.) Learners on the autism spectrum: Preparing highly qualified educators and related practitioners ( ). Shawnee Mission, KS: AAPC Publishing. Terri Cooper Swanson, Ph.D. 20