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Health Among Adults with Autism Spectrum Disorders

Health Among Adults with Autism Spectrum Disorders. Alan Gill MD Tacoma Family Medicine November 3, 2017. Family physician with extensive experience providing primary care to adults with various developmental disabilities Matt’s Dad Long term advocate

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Health Among Adults with Autism Spectrum Disorders

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  1. Health Among Adults with Autism Spectrum Disorders Alan Gill MD Tacoma Family Medicine November 3, 2017

  2. Family physician with extensive experience providing primary care to adults with various developmental disabilities • Matt’s Dad • Long term advocate • No financial conflicts of interest to declare

  3. Objectives • Discuss health care needs of individuals with autism • Autism Speaks 2017 Special Report • Explore shortcomings of current transition and adult services • Share current efforts in Pierce County • Recognize need for investment in and development of adult services

  4. Some Numbers… • Prevalence estimate rise from 4-5/10,000 to 1 in 68 • 1/3 of individuals are nonverbal • ~ 32% also have intellectual disability with IQ < 70 • 24% have IQ 71-85 • Average cost per year to care for a child with autism $60,000 • Majority special education and lost parental income • Lifetime cost estimate $1.2-2.4 million • 2015 US cost of care for individuals with ASD $268 billion • 1-2% of autism research funding spent on life span issues

  5. Excess Mortality • Mean age of death for individuals with autism 36.2 years vs 72.0 for US general population • 1999 to 2014 US National Vital Statistics System • 27.9% injury related • Drowning #1 cause of death in children • Joseph Guan, Guohua Li. Injury Mortality in Individuals With Autism.  American Journal of Public Health May 2017, 107 (5) 791-793. • Odds Ratio for all cause mortality 2.56 in Sweden • 1987 to 2009 two nation wide population based registries • Low functioning ASD OR 5.78, high functioning ASD OR 2.18 • Mean age of death autism 53.87, control 70.20 years (39.50 y for low functioning ASD) • Hirvikoski T et al. Premature mortality in autism spectrum disorder. The British Journal of Psychiatry Mar 2016, 208 (3) 232-238

  6. Excess Morbidity and Mortality • Excess mortality is a function of co-morbidities, not autism itself • 40 times more likely to die early of a neurologic condition if they also have a learning disability • Epilepsy • Nine times more likely to die of suicide • Elevated risk of anxiety and depression • 46.3% of adolescents with ASD are victims of bullying • Accidental deaths • Higher risk of other diseases including obesity, diabetes, and heart disease • Multiple associated health conditions • Autism and Health: A Special Report by Autism Speaks 2017

  7. HeaLthcare Transition to Adult Services • 50,000 age out of school based services annually • Transition to adult health care often delayed • Half the rate of others with special healthcare needs • Delay may be for years • Those with greater needs are more likely to transition poorly • Cheak-Zamora NC, Yang X, Farmer JE, Clark M. Disparities in transition planning for youth with autism spectrum disorder. Pediatrics 2013 March 131(3) • Serious lack of both primary and specialty care providers

  8. Dilemmas in Primary Care • Personal comfort/training with autism/developmental disabilities • bewildering array of interventions suggested for autism • Lack of understanding of the multiple service systems • Communication difficulties • Adequate vs excessive medical evaluation and intervention • Intolerance of visits, exams • Mental/behavioral health issues • Inadequate behavioral psychoactive med management supports • Availability of specialty expertise • Time & reimbursement

  9. Educational Outcomes • Middle and high school students with ASD compare to all students receiving services under IDEA • More likely to have chronic health or mental health condition (43% vs 28%) • More likely to have challenges communicating (50% vs 29%) • Less likely to independently manage ADLs (17% vs 46%) • Less likely to know how to make a friend (76% vs 92%) • Less likely to get together with friends weekly (29% vs 52%) • National Longitudinal Transition Study-2

  10. Trends in Young Adults with ASD Age 20-25 • Less than 1 in 5 (19%) have ever lived independently, 87% with parent or guardian • 58% have ever worked during their early 20’s • 36% have ever participated in any post secondary education • 63.9% with SSI benefits • National Longitudinal Transition Study-2

  11. Educational Transition & Outcomes • https://www.seattleu.edu/media/ccts/post-schoolsurveyandoutcomes/CCTS-Indicator14-Mini-Report-2014-2015.pdf

  12. Health Challenges • Autism and Health: A Special Report by Autism Speaks 2017 • Survey of issues • Premature mortality • Mental health • Depression, anxiety, suicide, ADHD • Epilepsy • GI issues • Feeding/eating • GERD • Links to references and parent/provider tools

  13. Epilepsy • ~ 20-33% of individuals with autism • More common among those with concurrent intellectual disability • Recognition/diagnosis can be difficult • Potential consequences • A significant cause of mortality • Sudden unexplained death in epilepsy (SUDEP) • Neurologic consequences: immediate functional consequences, permanent damage • Poor academic performance, unemployment • Injuries: falls, fractures, burns • Increased dependency • Anxiety and depression • Medication side effects • Social stigma, isolation

  14. Feeding & Eating Issues • Feeding disorder = problem eating appropriate amount or type of foods • ~ 70% of children • Restrictive patterns color/texture • Overeating • Mealtime behaviors • Sensory aversions, anxiety, rigidity • Motor issues with chewing and/or swallowing • GI issues • Pica = eating nonfood items • Potentially lethal • Assess for zinc, iron deficiency, lead poisoning • Behavioral interventions • Eating disorders = problems of body image and fear of weight gain • Less common

  15. Feeding Interventions • Mixed data on nutritional consequences • Consider referral for nutritionally incomplete diets, associated disruptive behaviors, severe rigidity/anxiety, under/over weight, suspected motor or GI problems • Multidisciplinary team • Speech, OT, nutrition, behaviorist, GI • Individualized plan • Reconsider necessity of psychoactive meds which may fuel weight gain

  16. Obesity • 2-17 year olds from Autism Treatment Network sample 33.6% overweight, 18% obese • Excess rates vs general population greatest age 2-5 • Alison Presmanes Hill, Katharine E. Zuckerman, Eric Fombonne. Obesity and Autism. Pediatrics Dec 2015, 136 (6) 1051-1061 • Chronic overeating • Overconsumption of high calorie, low nutrient foods • Correlates with number of behavioral medications • FDA approved meds risperidone and aripiprazole • Lower physical activity likely a contributor

  17. Gastrointestinal Disorders • OR 7.92 for GI symptoms and associated significant behaviors in case control study of 24-60 month olds with ASD in California • Abdominal pain, gas, diarrhea, constipation, painful BM • Behaviors: stereotypy, irritability, hyperactivity, social withdrawal • Compounded by communication difficulties • Chaidez V, Hansen RL, Hertz-Picciotto I. Gastrointestinal problems in children with autism, developmental delays or typical development. Journal of autism and developmental disorders. 2014;44(5):1117-1127. • Microbiome, gut-brain connections may contribute • Some studies of probiotics in progress • AHRQ finds insufficient evidence to reach conclusions regarding gluten free and/or casein free diets

  18. Common GI Disorders • Chronic constipation • 3.5 x rate for typically developing peers • Can lead to hemorrhoids, fissures, prolapse, obstipation, toileting aversion • Low fiber diets (gluten free, restricted interests), low fluid intake, meds, toileting resistance • Less common neurologic, metabolic, anatomic, or motility issues • Tx = diet improvements, meds, behavior based toileting interventions

  19. Common GI Disorders • Chronic diarrhea • Wide differential: infection, inflammatory bowel disease, irritable bowel, lactose or fructose intolerance, allergies, celiac disease (gluten), severe constipation • Requires appropriate diagnostic evaluation • Diagnosis based treatment

  20. Common GI Disorders • Gastroesophageal reflux disease • Some degree of heartburn is universal • Diagnosis difficult with limited communication ability • Cough, hoarseness, posturing (Sandifer syndrome), reswallowing, sleep disturbance, behaviors such as food refusal, irritability, self injury, tapping throat, head banging • Worse lying down • Complications can include esophageal ulcerations, strictures, weight loss • Uncertain diagnosis or refractory symptoms may require diagnostic testing • Tx may include smaller meals, increase time between meals and bedtime, elevate head of bed, avoid aggravating foods, H2 blocker or proton pump inhibitor, rarely surgery (Nissen fundoplication)

  21. Sleep Problems • > 50% of children with autism • Initiating, maintaining sleep, early rising • Night terrors • Potential consequences • Caregiver exhaustion • Increased daytime behaviors • Exacerbation of seizures • Wandering • Potential causes • Epilepsy, anxiety/depression, ADHD, poor sleep hygiene (screen time, sleep schedule), sleep apnea, possible genetic defects in REM or circadian rhythm

  22. Sleep Problems • Autism Speaks parent resources • Schedules/routine, daytime physical activity, avoid evening screen time • Possible meds • Melatonin • Clonidine • Bedtime dosing of other sedating meds targeting a specific behavior/problem

  23. Mental Health • Autism related behaviors • Stereotypic behaviors • Insistence on sameness • Restricted interests • Sensory over/under responsiveness • Avoid labelling manifestations of ASD as mental health issues • No medication has been shown to alter the prognosis of autism • Autism Speaks cites studies supporting 54 to 70% rate of one or more comorbid mental health conditions

  24. Mental Health Before considering a psychiatric diagnosis, assess and address sequentially possible causes of problem behaviour, including physical (eg, infections, constipation, pain), environmental (eg, changed residence, reduced supports), and emotional factors (eg, stress, trauma, grief). Primary Care of Adults with Developmental Disabilities: Canadian Consensus Guidelines. Sullivan WF et al. Can Fam Physician. 2011 May;57(5):541-5

  25. Attention Deficit and Hyperactivity Disorder • 30 to 61% incidence in persons with ASD • Large symptom overlap • Diagnosis of one tends to delay diagnosis of the other • Co-occurrence worsens daily function, health, and quality of life • DSM-5 allows diagnosis of both • American Academy of Pediatrics guideline • Helpful symptom evaluation and medication selection pathways • Clinical Practice Pathways for Evaluation and Medication Choice for Attention-Deficit/Hyperactivity Disorder Symptoms in Autism Spectrum Disorders. Mahajan R et al. Pediatrics Nov 2012, 130 (Supplement 2) S125-S138

  26. Anxiety Disorders • 11 to 42% incidence • Common triggers: social interactions, disruption of routine, sensory sensitivities • Social anxiety particularly prominent in adolescents • Rates and treatment among nonverbal individuals particularly unclear • AAP guideline • Evaluation recommendations • Modified cognitive behavioral therapy particularly for higher functioning ASD • Medication suggestions recognizing paucity of data • None specifically approved for anxiety in autism • Assessment and Treatment of Anxiety in Youth With Autism Spectrum Disorders. Vasa R et al. Pediatrics Feb 2016, 137 (Supplement 2) S115-S123

  27. Depression • ~ 7% of children, 26% of adults with ASD • Rises with age, IQ, and concurrent medical problems • High rates of death from suicide • Consider screening teens and adults for both depression and suicidal thoughts as part of routine care • Difficult diagnosis due to symptom overlap and ASD related difficulty identifying and expressing feelings • No simple screens validated for ASD • Treatment CBT, usual meds, exercise • No meds specifically approved for ASD, side effect rates may be higher

  28. Less common? • Bipolar • Symptom overlap • Irritability • Sleep disturbance • Hyperactivity • Socially inappropriate • Estimates 6-27% • May be over diagnosed • Meds with higher potential toxicity • Lithium, antipsychotics, anti-epileptics • Schizophrenia • ASD historically childhood schizophrenia • 0-35% in ASD across studies • Symptom overlap • Differentiated by presence of psychosis and age of onset • Consider autism in adults with schizophrenia and young adults with ASD and new symptoms

  29. Transition Needs • Behavioral interventions • Case management/coordination • Communication Services • Day programming • Family education and supports • Life skills education & experience • Medical care • Mental health care • Postsecondary education planning and supports • Residential supports • Social supports • Transition planning services • Transportation supports • Vocational supports YOUTH WITH AUTISM: Roundtable Views of Services Needed During the Transition into Adulthood GAO-17-109: Published: Oct 18, 2016. Publicly Released: Nov 17, 2016.

  30. GAPS IN SERVICES FOR PEOPLE WITH AUTISM AND OTHER DEVELOPMENTAL DISABILITIES AND THEIR FAMILIES Shortage of ASD-related service providers across the lifespan: Diagnostic services Mental health services ABA Providers Case management (navigating school, community-based services, etc.) Adult community-based services (housing, transportation, etc.) Adult primary care providers are also in short supply, delaying transition from pediatric care, often for years Inter-agency coordination/cooperation also needs significant improvement (education/health/mental health/DDA/DVR, etc.)

  31. Services for Adults with ASD • ASD is complex with very significant associated health and mental health problems • We are terribly unprepared for the 50000 transitioning students each year • Failed medical and educational transition are a disaster for individuals and their families • Great risk of social isolation, loss of hard won skills, and adverse health outcomes • There is an imperative for us to act

  32. Is the Nation Waking Up? • Young Adults and Transitioning Youth with Autism Spectrum Disorder • Report mandated by Autism CARES Act of 2014 • Published August 3, 2017 • Summarizes current Federal efforts, gaps in services and research • NIH currently funding 7 pilots on transition and on maintaining adult engagement • Autism and Health: A Special Report by Autism Speaks 2017 • 2016-2017 IACC Strategic Plan for Autism Spectrum Disorder • Roundtable Views of Services Needed During the Transition into Adulthood 2016

  33. ACT Mission and Vision MISSION: To enrich the lives of all individuals and their families in the South Puget Sound impacted by autism and related developmental disabilities. VISION: The Autism Coalition of Tacoma (ACT) was formed to address significant gaps in services for individuals and their families affected by autism and related developmental disabilities across the lifespan. Through smart and sustainable collaborations across multiple agencies and organizations, new programs will be created, existing programs will be enhanced and new opportunities for streamlining, integration and innovation will be identified.

  34. UW Autism Center (Tacoma/Seattle) CURRENT SERVICES Exceptional, evidenced based clinical services across the lifespan ·       Diagnostic Services (infancy through adulthood) ·       Applied Behavior Analysis (ABA) ·       Speech and Language Therapy ·       Social Skills Groups Training and Community Engagement ·       Professional workshops and school consultation ·       Student fieldwork FUTURE SERVICES ·       Offer new UWT course on ASD   ·       Establish support program for UWT students with ASD

  35. MultiCare Health System Pediatric multidisciplinary diagnostic and therapeutic services at Mary Bridge Children’s in Tacoma and Children's Therapy Unit in Puyallup including developmental behavioral pediatrics, pediatric neurology, OT, speech and physical therapy, physical medicine and rehab, and mental health services in limited capacity Adult Developmental Clinic Pilot Partnership with UW Medicine

  36. JBLM C.A.R.E.S. Center for Autism Resources, Education and Services STRATEGIC PILLARS Pillar 1: Link children and families to existing RESOURCES Pillar 2: Provide comprehensive EDUCATION throughout the lifespan Pillar 3: Identify and facilitate appropriate SERVICES Pillar 4: Collect ongoing DATA to determine optimal therapeutic outcomes

  37. Agenda for Change in Washington • Effective transitions • High school to adult services • Healthcare • Build health and mental health infrastructure • Truly person centered planning • Availability of all HCBS waiver services • Effective case management • Reasonable case loads and wages • Adequate funding: 41st in the nation is not good enough! • End the “no paid services case load” waiting list • Living wages for caregiver

  38. References/Resources • Autism and Health: A Special Report by Autism Speaks 2017 • Young Adults and Transitioning Youth with Autism Spectrum Disorder 2017 • Youth with Autism: Roundtable Views of Services Needed During the Transition to Adulthood 2016 • Interagency Autism Coordinating Committee Strategic Plan 2017 • Secondary School Experiences of Students with Autism • Medical Therapies for Children with Autism Spectrum Disorder-An Update AHRQ May 2017 • Got Transition

  39. References/Resources • Autism Spectrum Disorders in Adults: Diagnosis and Management National Institute for Health Care Excellence 2016 • Primary Care of Adults with Developmental Disabilities: Canadian Consensus Guidelines 2011 • Autism at-a-Glance Series The Center on Secondary Education for Students with Autism Spectrum Disorder

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