Transitioning Young Adults Living With Autism Spectrum Disorder (ASD) into Adulthood

Transcription

1 Transitioning Young Adults Living With Autism Spectrum Disorder (ASD) into Adulthood Kathy Rogers, DNP, RN, CNE Ursuline College

2 Patrick-My inspiration

3 Objectives What are the current statistics about the number of young adults with ASD? What is the latest research about how the brain of these individuals works? What are the communication challenges for those young adults with ASD? Are these individuals transitioning into adulthood successfully? Are there healthcare services available for these individuals? What role can APRNs and nurses play?

4 When autism grows up

5 ASD definition

6 Behavioral manifestations Does not respond to own name by 12 months Avoids eye contact Avoids or resists physical contact Echolalia Delayed language and speech skills Difficult to console Obsessiveness Does not point at objects to show interest Hand flapping, rocks body or spins in circles Becomes upset of minor changes

7 Autism Spectrum Disorder prevalence %

8 Research in the possible causes of autism

9 Genetics ASD is highly heritable Monozygotic or identical twins % likely if one twin is diagnosed with autism Siblings- 25 times likely to have autism (Daly, 2016)

10 Environmental Maternal and paternal age Maternal gestational diabetes Exposure to maternal rubella infection Drugs-ethanol, thalidomide, valproic acid and misoprostol

11 Brain functioning Differences in electrical activity Differences in cerebellum, thalamus, hippocampus, corpus callosum and amgydala Excess neurons in prefrontal cortex Abnormal formation of synapses and dendritic spines Differences in neurotransmitters- serotonin and glutamate

12 Conceptual framework of autism

13 Co-occurring disorders Four categories Developmental- language disorder, ADHD Psychiatric-OCD, ODD, Bipolar, anxiety Neurological-epilepsy, cerebral palsy Medical-genetic/congenital Fragile X- genetic intellectual disability. Protein for normal brain development (FMRP) is absent- mental retardation Symptoms of fragile X closely relate to ASD

14 Common chronic illnesses with ASD Gastrointestinal GERD, constipation, bowel retention, nutrition Sleep disorders Obesity Depression Anxiety Epilepsy Hypertension

15 Comparison rates of medical conditions

16 Disparities in healthcare

17 Prevention screening

18 CHALLENGES FOR ADULTS

19 Reasons to seek diagnosis in adulthood High functioning individuals may experience difficulties in significant areas of life Marital relationships Employment Personal A sense of not fitting in Labeling

20 Diagnosing ASD in adults Difficult to diagnosis due to lack of valid instrument for adults Finding a clinical psychologist or psychiatrist able to diagnosis autism in adults Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R)- can be taken online as a screening instrument not diagnostic

21 TRANSITION FROM ADOLESCENCE TO ADULTHOOD

22 Transition into adulthood (National Autism Society website, 2014) Approximately 50,000 young adults living with ASD will turn 18 years old this year.(national Autism Indicators Report: Transition into Young Adulthood, 2015 ) Life time cost of autism- $ million dollars (Autism Speaks, 2012) 500,000 will enter adulthood over the next decade (National Autism Indicators Report, 2015) 3.5 million Americans live with ASD 35 percent of young adults (ages 19-23) with autism have not had a job or received postgraduate education after leaving high school. In June 2014, only 19.3 percent of people with disabilities in the U.S. were participating in the labor force working or seeking work. Of those, 12.9 percent were unemployed, meaning only 16.8 percent of the population with disabilities was employed. (Bureau of Labor Statistics, 2014)

23 Transition from pediatric to adult primary healthcare services Resources for transitioning older adolescents and young adults living with ASD into any adult social and health services reduce dramatically after age 22 (Gerhardt, 2009). Educational services end at age 22 Pediatric services continue to provide care for ASD youth beyond age 22- cannot transition them out of the service

24 Falling off the cliff

25 Healthcare provider readiness Healthcare providers are in a key position to provide transitional care services within a medical home model to adolescents living with ASD Adult healthcare providers, specifically physicians and APRNs, lack knowledge and a clear understanding about ASD, are unprepared to discuss transition planning and provide care to older adolescents and young adults living with ASD into adult primary care practices (Will, Barnfather, & Lesley, 2013)

26 Resources for healthcare providers Education Center for Disease Control and Prevention CNE credit ASERT PAAutism Care coordination Got transition? AASPIRE

27 STRATEGIES - ASSESSMENT, COMMUNICATION AND TREATMENT

28 What APRNs need to know Information processing Neuro-typicals process information with all five senses ASD process one basic piece of information at a time Hypersensitive to a specific sense will receive the attention Each task has a series of steps. Any interruptions force the person to restart the steps Giving too many instructions at one time causes anxiety and stress because the person with ASD does not know which set of tasks to complete first.

29 What APRNs need to know Communication

30 What APRNs need to know Communication Use visual supports and technology Speak less and use more visuals Do not use jargon or slang. Speak literally Speak directly to the patient during assessment. Ask for clarification Reduce sensory stimulation Offer opportunities to touch equipment Blood pressure TAKE YOUR TIME-PLAN AHEAD TO ALLOW EXTRA TIME IF POSSIBLE

31 The role of the APRN Managing polypharmacy Assessing safety, nutrition, sleep, exercise Assuring the individual is receiving life skill education necessary for self-care Monitoring medical conditions high risk for person with ASD Knowledge about available resources and referral to care coordinators, case managers Supporting families, caregivers and siblings-stress Provide person-centered care Respect for the individual s rights

32 The uniqueness of ASD

33 Questions?

34 Thank You!!

35 References American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Autism Speaks (2015). Barber, C. (2011). Autism and Asperger s Conditions: a practice guide for nurses. London: Quay Books Bruder, M.B., Kerins, G., Mazzarella, C., Sims, J., & Stein, N. (2012). Brief report: the medical care of adults with autism spectrum disorders: identifying the needs. Journal of Autism and Developmental Disorders, 42, Center for Disease Control and Prevention (2015) Daily, C. M. (2016). The key to autism: an evidence-based workbook for assessing and treating children & adolescents. Eau Claire: PESI Publishing and Media. Gerhardt, P. (2009). The current state of services for adults with autism. Organization for Autism Research Advancing Futures for Adults with Autism National Town Hall Meeting. Retrieved from

36 References Giarelli, E., & Gardner, M.R. (2012). Nursing of Autism Spectrum Disorder. New York: Springer Publishing Company. National Autism Society website, ASERT- PA Autism. (2015). Nicolaidis, C., Raymaker, D., McDonald, K., Dem, S., Boisclair, W.C., Ashkenazy, E., & Baggs, A., (2012). Comparison of healthcare experiences in autistic and non-autistic adults: a cross-sectional online survey facilitated by an academic-community partnership. Journal of General Internal Medicine, 28 (7), Doi: /s Ouellette-Kuntz, H., Cobigo, V., Balogh, R., Wilton, A., Lunsky, Y.,(2015). The uptake of secondary prevention by adults with intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 28, Ritvo, A.R., Ritvo, E.R., Guthrie, D., Ritvo, M.J., Hufnagel, D.H., McMahon, W., Eloff, J. (2011). The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R): a scale to assist the diagnosis of autism spectrum disorder in adults: an international validation study. Journal of Autism and Developmental Disorders, 41 (8), Doi: /s

37 References Roux, Anne M., Shattuck, Paul T., Rast, Jessica E., Rava, Julianna A., & Anderson, Kristy, A. (2015). National autism indicators report: transition into young adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, Rogers, K. & Zeni, M.B. (2015). Systematic review of medical home models to promote transitions to primary health care for adolescents living with autism spectrum disorder. Worldviews on Evidence-Based Nursing, 12, Will, D., Barnfather, J. & Lesley, M. (2013). Self-perceived autism competency of primary care nurse practitioners. Journal for Nurse Practitioners, 9,