Unique Considerations in the Approach to Medical Care of the Autistic Child

Transcription

1 Unique Considerations in the Approach to Medical Care of the Autistic Child November 4 th, 2012 Chris Ladish, PhD Pediatric Neuropsychologist Mary Bridge Children s Hospital & Health Center Pediatric Psychology & Psychiatry Services

2 Statements I have no affiliation, financial interest, or arrangement with any corporate organization To the best of my knowledge, I will not formally discuss the use of any products for unlabeled use

3 Why Get Training in Autism? High Incidence Now estimated to be 1 in 88 Mortality risk for ASD is twice as high Higher risk of specific medical challenges Meltdowns, running, agitation increase with stress. Much of this stress can be decreased through provider compassion, education and understanding.

4 Medical Appointments and Autism

5 Autism Spectrum Disorder (ASD) Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior. Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group. National Institute for Neurological Diseases and Stroke

6 Core Challenges in ASD Impairment in reciprocal social interaction; inability to intuit social rules Impairment in Communication Restricted, repetitive, and stereotyped patterns of behaviors, interest, and activities

7 Associated Features in ASD Atypical sensory processing (will not respond typically to touch, texture, sound, pain, scent, tastes or visual stimulation) Rigidity, limited acceptance of change Poor emotion regulation Low tone, motor incoordination Atypical interests, behaviors, attachments

8 ASD: Incidence, prevalence, variability Occur in 1 in 88 (boys 1/54, girls 1/252) More common in males (4:1) Course of onset varies A variety of skills can be affected Have a great deal of heterogeneity

9 Its Not All Bad News

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11 Examining the Autistic Patient

12 Goals of Interview & Examination Yours To help the child Gather valuable information Provide emergent consultation and treatment as smoothly as possible Minimize unnecessary harm/discomfort Theirs To feel better Minimize confusion in a novel setting Escape unwanted sensory input Manage anxiety Get through (and out) as quickly as possible

13 Provider Essentials Knowledge of core features of autism Knowledge of how core challenges manifest in your patient: communication, sensory processing, interests Flexibility tailored to patient needs Compassionate approach

14 What Medical & Procedural Situations Bring Unpredictability Sensory overload Fearful Stimuli Loss of Control Pain, discomfort Confusion Demands for Compliance and Calm

15 Key Components for Effective Examination of an Autistic Patient Safe environment Preparation of provider/service Alert hospital of patient s autism and request patient be moved up in triage Ability to communicate with the individual Management of sensory input Awareness of unique interests and needs of individual Reduction of wait time Involve supportive services: CLS, social work, psychology

16 Key Components for Effective Examination of an Autistic Patient Preparation of the patient/family Increase predictability: where going, who will be there, what will be seen Provide practice without pressure Allow primary caregiver to accompany patient Allow opportunities for self soothing behavior and distraction Consider private waiting area or room patient earlier

17 Inpatient Assessment Questions Pertinent to Acute Admission of an Autistic Child: Is the child verbal or nonverbal? What is communication system? What is the developmental level of the child? What are the child s typical home routines? How does child react under stress? Is there a tendency to wander, where? What helps calm the child? Special interests? Special toys? How and who is best to approach the child? Attachment objects and access?

18 Physical Examination Considerations Single quiet room with decreased sensory input Consider making appointment first or last of day Allow attachment objects, consider having sensory toys available for calm and distraction. Consider tactile sensitivities: cloth gowns versus paper, impact of adhesive materials and bandages, many children with ASD do NOT like having head touched Perform physical exam distal to proximal Wandering; Have someone remain with individual at ALL times.

19 ATN Phlebotomy Toolkit

20 Communicating with an Autistic Patient

21 When Speaking to an Autistic Child Be concrete Avoid abstract language Ask for single step at a time Repeat statements to increase ability to to process Sentences should be short and straight forward Offer choices where possible

22 Speaking to the Autistic Child Do not bombard with language Keep requests simple Use name to gain attention Tell what TO do, not what to STOP doing Avoid slang Use visual symbols, pictures, models

23 Listening to the Autistic Child Allow response and processing time Consider communication systems Involve pictures and models to facilitate expression of the individual where helpful Autistic individual may echo previously heard statements May use scripting

24 Using Pictures for Communication

25 Medical Comorbidities

26 Scarpinato, N. et al. Caring for the Child With an Autism Spectrum Disorder in the Acute Care Setting. J Spec Pediatr Nurs Jul; 15(3):

27 A Parent s Perspective

28 Sleep One of THE most common parent complaints (estimated 40-83% of children with ASD) Impacts entire family system Delayed onset and frequent night time awakening Interaction between poor sleep and poor appreciation of social rules increases likelihood of dangerous behavior during period of less supervision (wandering, elopement). Some evidence of abnormality of melatonin regulation in children with ASDs Melatonin may be effective for improving sleep

29 Seizures 11-39% prevalence among individuals with ASD Higher risk when associated intellectual impairment and/or motor deficits. Onset before 5 or during adolescence While EEG abnormalities may be seen more frequently in individuals with ASD, universal screening of patients in absence of clinical indication is currently not supported. Recommended lower threshold for work-up of clinical spells in this population

30 Gastrointestinal Problems Abnormal stool patterns, frequent constipation, frequent vomiting, frequent abdominal pain more commonly reported in ASD (70%) than other developmental disabilities (42%) or general population of children without DD (28%). In children with ASD who receive endoscopy, higher rates of lymphoid hyperplasia, subtle esophagitis, gastritis, duodenitis and colitis have been described. Need clinical indication for evaluation but consider occult gastrointestinal discomfort for children presenting with acute onset of outbursts or self injury

31 Nutrition Tendency toward restricted diets Many prefer white, bland, carbohydrate foods Parent tendencies to stick with what works in order to get child fed consider behavioral role Sensory discomfort may limit willingness to try foods Malnutrition rare Currently no strongly and consistently conclusive scientific studies to support the use of dietary interventions.

32 Pain Response to pain may be atypical Sensory discomfort may also be experienced as pain May not respond appropriately to Wong-Baker Faces of Pain Scale Do not equate absence of typical response to pain with absence of pain Involve key caregivers as identifiers of typical pain behavior Consider use of EMLA cream for blood draws

33 Specific Behavioral Challenges

34 Behavioral Challenges Associated with ASD Retreat into self stimulation Verbal challenge Repeated questioning, vocalizing, humming Increased movement, pacing, agitation Running, wandering, hiding Withdrawal, shut down Screaming, crying, meltdowns Self Harm: head banging, biting

35 Behavior Happens for a Reason Cope with sensory over-stimulation Gain more control over environment, including self and others Express overwhelm in change in expectations, routine, plan or context Response to a misinterpreted social cue Attempt to socially engage (inappropriately) Attempt to regulate frustration, anxiety or anger by engaging actions that are calming to individual

36 What Soothes & Comforts Certain sensory toys Opportunity to self stim Pressure (weighted blankets may help) Quieter voice Attachment object Talking about areas of high interest

37 Meltdowns Negative contingencies don t work Use humor/distraction, interests and incentives to de-escalate power struggle Provide time and space Step back from individual Quiet your voice Limit stimulation Arms down, assume nonthreatening stance Self stimulation or attachment object may help individual use self calming techniques

38 Restraint Last option Favorite object not helping Anticipate force and agitation Multiple individuals to avoid harm to staff and individual Restrain face up, head and midsection support Blanket roll if needed for security, safety

39 Pharmacological Interventions Target sleep, irritability, anxious and obsessive behaviors, blurring of fantasy/reality, attention Consideration of comorbid mood disorders Best addressed with ongoing outpatient monitoring in conjunction with behavioral support ED role Accidental overdose Medication reaction after hours Agitation beyond capacity to treat as outpatient

40 Summarizing: Making Your Job Easier Safety and care of patient remain the priority Where possible, offer a calming space Know the communication system Increase predictability by letting individual know what you are doing and why Provide concrete information about expectations Provide visual aides and cues; have simple pictures available Where possible, decrease sensory overload Stay educated and know your patient

41 Closing Remarks Rates of 1/88; 7 times greater likelihood of coming in contact with EMS. You will likely respond to an autistic individual. Challenges in social, communication and self regulation skills as well as atypical interactions with the environment characterize these individuals. Many of the challenges associated with ASD respond to intervention, knowledge & environmental change. You can mitigate much of the stress for the autistic child and family by remaining compassionate and staying educated about the unique issues faced by autistic individuals.

42 Autism Coming Closer to Home

43 Questions

44 References & Resources Mouridsen SE, et al. Mortality and causes of death in autism spectrum disorders: an update. Autism Jul;12(4): Rzucidlo, S.F. (2007). Autism 101 for EMS, from SPEAK Web site:

45 References & Resources Scarpinato, N. et al. Caring for the Child With an Autism Spectrum Disorder in the Acute Care Setting. J Spec Pediatr Nurs Jul; 15(3): Shavelle RM, et al. Causes of death in autism. J Autism Dev Disord Dec;31(6):

46 References & Resources Sokol, John. Advice to Autism Parents from an Emergency 911 Responder. From About.com/Autism web. 9/7/2011.

47 Web Based References & Resources Multiple resources available via Autism Speaks

48 Post Test/Evaluation Please copy and paste link into your browser to access post test/evaluation form. C110412posttest 80% correct answers required for successful completion. Within 21 days of passing the post test, physicians will be sent a CME certificate and non-physicians will be sent a participation certificate.