Living as an Adult with Autism in

Washington State:Hope for the Future

Gary Stobbe, MDDirector, UW Medicine Adult Autism ClinicMay 31, 2014

www.forrestsargent.com

OBJECTIVES

• What is the current state for adults with ASD

• Where do we see barriers (and opportunities)

• What are we doing and where are we headed

- 50,000 individuals with ASD enter adulthood in the US annually based on current CDC estimates of 1 in 68 (Wang, 2014)

ASD IN WASHINGTON STATE

• Question – how many individuals are currently living in Washington State with ASD? How many are adults?

• Answer – we don’t knowo (David Maltman, Policy Analyst,

Washington State Developmental Disabilities Council, 5/2014)

• 6,984,900 estimated population in 2014 (over 100,000?)

ASD IN WASHINGTON STATE

• Seattle Children’s Autism Centero Opened August 2009

o Over 17,000 patient visits expected in 2014

o 4181 unique patients seen in 2013-14 (373 pts age 16-18)

• UW Medicine Adult Autism Clinico Opened September 2012

o Over 500 unique patients seen since opening

UW MEDICINE ADULT AUTISM CLINIC

0

20

40

60

80

100

120

Total PatientAppointments

Unique PatientAppointments

Number of total and unique (new) patients seen per month

Patient visits, total and unique, September 2012 – April 2014

UWMAAC PATIENTS – 3 PROFILES

• “Smooth transitions”

o Goal of seamless transition to adulthood• “The drifters”

o Drift until crisis, often mental health related• “The undiagnosed”

o Typically high-functioning, numerous mental health issues IRB-approved chart review underway

• Chart review study and survey questionnaire underway

o Thanks to Ventura Grant (Thanks Sue and Ed!)

Adult ASD – Factors Impacting Trajectory

“Rock Alone”www.forrestsargent.com

“Autism, is part of my child, it’s not everything he is. My child is so much more than a diagnosis.”

- S.L. Coelho, The World According to August – One Good Friend

DSM-IV Pervasive Developmental Disorders

Language/Comm. Deficits

Repetitive Behaviors/ Restricted Interests

Social Impairment

PDD

-Delay/abnormal behaviors prior to age 3-Sub-catagories – Autistic d/o, Asperger’s, PDD/NOS

DSM-5

Autism Spectrum Disorders

Persistent Deficits in Social

Communication and Social

Interaction

Restrictive/Repetitive Patterns of Behaviors,

Interests, or Activities

ASD

-Must be present in early childhood (age 8 or less)-No sub-categories (with/without ID and/or language impairment)

DSM – THE HUMBLE TRUTH

“so far, we don’t have rigorously tested, reproducible, clinically actionable biomarkers for any psychiatric disorder…we need a decade of intense scientific work – from molecular factors to social determinants – to understand normal and abnormal behavior, based on a deep understanding of mechanisms.”

• Thomas Insel, MD Director, NIMH (Am J Psychiatry, 2014)

OUTCOME TRAJECTORIES

• 3-25% “optimal outcome” (Helt, 2008)

• Roughly 60% make progress but continue to require some types of support

• Approximately 20% remain severely impacted requiring 24/7 support (Seltzer, 2004)

20% poor outcome

60% moderate progress

20% optimal outcome

VARIABLES IMPACTING OUTCOME

• Intrinsic factorso Cognitive ability

o Severity of core autistic deficits – communication, social, restricted interests (motivation)

o Behavioral disturbances

o Other mental/medical health co-morbidities

• Extrinsic factors o socioeconomic

o access to services/early intervention

o “case management” (Myers, 2012)

TRAJECTORY INFLUENCES NEED

• Considerationso Guardianship? POA?

o Post-secondary school? Employment?

o Living arrangement?

Adult ASD –Barriers to Success

“Metal Sky”www.forrestsargent.com

BARRIERS TO SUCCESS

• Lack of adult providerso Physicians serving adults with ASD, only 20% received

training during residency (Bruder, 2012)

o Parents view PCPs as unable to assist vast majority of autism-related problems (Carbone, 2013)

• Lack of transition tools for pediatric providers

• Parents/caregivers delay; anxiety about future planning

• Lack of identifying person responsible for transition

• Financial barriersTransitions Clinical Report Authoring Group, 2011

THE “NO SERVICES” LIST

• 14,600 families eligible for services in WA, yet not receiving due to funding (Rosenthal, 2014)o Doesn’t include individuals needed

assistance but not meeting DDA eligibility

• DDA Eligibility (expected changes – July 1, 2014)o DSM-IV or DSM-5 (severity level 2/3)

o Adaptive skills > 2SD below mean

o For DSM-5, IQ 1 SD below mean (<85)

BARRIERS TO SUCCESS

• Recreation and social engagemento Influenced by “case management” (Myers, 2012)

• Post-secondary school and employmento Employment rates 4.1% – 11.8% regardless of intellectual ability

(Taylor & Selzer, 2011)

o Lower rates of employment, vocational training, and post-secondary education compared to other DDs (Shattuck, 2012)

o Demand for vocational rehab services for transition age youth with autism is increasing steadily, but success in achieving employment outcome rate is declining

o Failure in higher ed due to cognitive inflexibility, exec fxn deficits, poor study strategies (Tops, IMFAR, 2014)

• Mental health issues and medical needs

NATIONAL LONGITUDINAL TRANSITION STUDY NLTS-2 (MYERS, 2012)

CP - “has youth participated in community activities in the last 12 months”SP – “get togethers, invitations, or phone calls in the last 12 months”

ASD EMPLOYMENT

• Decline in employment status over time – decline is 15x greater for women (Taylor, 2014)

• Greater vocational independence relates to subsequent reduction in autism symptoms and maladaptive behaviors as well as increase in ADLs – the reverse does not hold true (Taylor, 2014)o The job is the treatment

MENTAL HEALTH IN ASD

• Inpatient hospitalizationo tripled between 1999-2009 for adolescents

with ASD (Nayfack, 2014)

• Suicidal ideationo Suicide attempts 4-fold increase in ASD

(Croen, IMFAR, 2014)

• Depression and anxiety o increased in ASD vs. DD/non-ASD

(Gotham, IMFAR, 2014)

MEDICAL HEALTH IN ASD

• Loss of adaptive skills after 30s

• Premature death

• Increased medical conditions

• Lower QoL than age matched DD ages 19-79 o (interpret with caution – preliminary, small

numbers, cohort effect?)

Geurtz, IMFAR, 2014

Adult ASD – Hope for the Future

- State level- Recreation and Social- Vocation- Mental Health- Provider training- Research

“Love in Action”Guy McDonell

WA STATE – IMPACT OF LITIGATION

• Allen Lawsuit (Western State; settled 2009) & Marr Lawsuit (Eastern State; settled 2012) 2.2 million in funding for community placement (2003)

Established habilitative Mental Health Units in state hospitals

• SB 5459 Regional Crisis Teams

Children’s Enhanced Respite

Community Crisis Stabilization Service (CCSS)

• SB 5117 establish intensive in-home supports – CIIBS waivers

• T.R. v. Quigley High quality and effective mental health services for children

Wraparound with Intensive Services (WISe) program

ABA SERVICES

• WA Health Care Authority, Group Health, Regence

• Established “Centers of Excellence” for Dx (26 statewide)

• 250 BCBA providers statewide (50 in academics, 100 contracted with Medicaid, 45 graduating this year)

• 160 children receiving service (but 1400 approved awaiting services)

• State plan limited to < 20 yo

• Shayan’s Fund – funded navigators to help access services in private insurance (Washington Autism Alliance and Advocacy)

2014 LEGISLATIVE SESSION – SUCCESS!

• SB 6387

o Creates Medicaid Individual and Family Services waiver (projected to move 4K off “no services” list)

• HB 2746

o Brings extra federal funding to medicaid personal care (will allow an additional 1K Basic Plus waivers and allow personal care to help train DD clients

• HB2616 - Assists parents in dependency hearings

• SB 5958 - Encourages student participation in IEP transition meetings

• SB6129 - Work group to investigate training for para-educators

• HB2544 - Improve birth screening for causes of ID

• HB2363 - Dependents of military receive DD services out-of-state

RECREATION AND SOCIAL

• Community Collegeso Continuing education after high school transition

• Residential opportunitieso Creating communities supporting skills and

social growth

• Activitieso Tavon Center

o Northwest Center

o Alyssa Burnett Adult Life Center

BURNETT CENTER

• Mission of lifelong learning

• “Classes” model similar to parks and recreation

• Focus on life skills, social skills, recreation and vocationo Create a model that can be replicable and

sustainable in other communities

o Thanks to Tessera and the Burnett Family!

VOCATION

• Washington Initiative for Supported Employmento Roads to Community Living (closure of Frances Haddon

Morgan Center)

o Partners for Work (Rotary International; interview skills)

o Building Careers and Community (Centers for Medicare and Medicaid Services; 36 individuals across the state)

• King County School to Work (S2W)o Aims to help students transition from the last year of school

o Brings the employment specialist on board before school ends

• Project SEARCHo Improved ASD employment outcomes from 6.25% to 87.5%

(Wehman, 2013)

MENTAL HEALTH

• IMPACT Model (Unϋtzer, 2002)o Utilizes care collaboration, care managers, stepped

care

o Improved outcomes, lower costs

o AIMS Center (aims.uw.edu)

• Project ECHO (Arora, 2011)o Interactive weekly online clinical consultation

o Outcomes rival those from tertiary care centers

• PALS Program (Hilt, 2009)o Telephone based mental health consultation

o State funded (palforkids.org)

TRAINING

• UWMAACo Opportunities for primary and specialty care

• Children’s Autism Centero Psychiatry

o Autism classes (First Steps, Next Steps, 101, 200, Autism Blog)

o The Burnett Center – community providers and mentors

• Haring Center (College of Education)o Special education, BCBA program

• CHDD o LEND Trainees – graduate, post-graduate, and mid-career

• UW Autism Centero Special education, parent training

RESEARCH

• Novel Therapeuticso FAST-AS – Targeting GABA-A for the Treatment of Social

Disability in Young Adults with ASD

o VANILLA – Vasopressin Antagonist to Improve Social Communication in Autism

• Natural Historyo “A First Look After Opening an Adult Autism Clinic” –

retrospective chart review of first 500 patients

• Geneticso Clinical genetic studies in adult ASD (Stobbe, 2013)

• Future Opportunitieso Impact of recreation and lifelong learning (Burnett Center)

“MY WISH LIST”

• Collaboration between medical, mental health, and the autism experto Capitalize on UW/Children’s expertise & telehealth

• Improve vocational statuso Fit square pegs into square holes

o Create supports and educate coworkers

o Restore master-apprentice teaching

• Accelerate the fieldo Training

o Treatment development/research

o Create public/private partnerships and investment in infrastructure

ECONOMICS OF AUTISM (WHAT IF…?)

• We can reduce cost of long-term care of individuals with ASD by some factor, how much do we save?

• Lifetime per capita societal costs $3.2 million (Ganz, 2007)o Largest cost is incurred during adulthood

o Lifelong care and lost productivity

• How many angels invest in failed startups?o A startup worthy of investment!

“The challenges they had faced together had taught them humility – the need to subsume their individual egos for the sake of the boat as a whole – and humility was the common gateway through which they were able now to come together and begin to do what they had not been able to do before .”

- Daniel James Brown, The Boys in the Boat: Nine Americans and Their Epic Quest for Gold at the 1936 Berlin Olympics

Thanks!Contact:gastobbe@uw.edu

“Party Boy”Wil KernerWilspapercutouts.com

REFERENCES

• Arora S, Thornton K, Murata G, et al. Outcome of treatment for hepatitis C virus infection by primary care providers. NEJM, 2011, 364(23): 2199-207.

• Bruder MB, Kerins G, Mazzarella C, et al. Brief report: the medical care of adults with autism spectrum disorders: identifying the needs. J Autism Dev Disord, 2012, 42: 2498-2504.

• Carbone PS, Murphy NA, Norlin C, et al. Parent and pediatrician perspectives regarding the primary care of children with autism spectrum disorders. J Autism Dev Disord, 2013, 43: 964-972.

• Ganz ML. The lifetime distribution of the incremental societal costs of autism. Arch Peds Adolesc Med, 2007, 161: 343-9.

• Gotham K, Brunwasser SM, & Lord C. Modeling growth of internalizing symptoms from childhood through young adulthood in autism spectrum and developmentally delayed samples. IMFAR, 2014, Atlanta.

• Helt M, Kelly E, Kinsbourne N, et al. Can children with autism recover? If so, how? Neuropsychology Review, 2008, 18:339-66.

• Hilt R, McDonell MG, Rockhill C, et al. The Partnership Access Line: establishing an empirically based child psychiatry consultation program for Washington State at Western Interstate Commission for Higher Education meeting, Denver CO, 3/5/09

• Insel TR. The NIMH research domain criteria (RDoC) project: precision medicine for psychiatry. Am J Psychiatry, 2014, 171: 395-97.

• Myers E, Kobayashi A, Stobbe G, et al. Longitudinal measures of community and social participation in young adults with autism. International Meeting for Autism Research, poster, Toronto, 2012.

• Nayfack AM, Huffman LC, Feldman HM, et al. Hospitalizations of children with autism increased from 1999 to 2009. J Autism Dev Disord, 2014, 44: 1087-94.

• Rosenthal BM. Thousands of families left out of state funding to help with developmental disabilities. Seattle Times, 2014 Feb 24: http://seattletimes.com/html/localnews/2022973288_disabledserviceswaitxml.html

REFERENCES

• Seltzer MM, Shattuck P, Abbeduto L, et al. Trajectory of development in adolescents and adults with autism. Mental Retardation and Developmental Disabilities Research Reviews, 2004, 10: 234-47.

• Shattuck P, Narendorf S, Cooper B, et al. Postsecondary education and employment among youth with autism spectrum disorder. Pediatrics, 2012, 6:1042-49.

• Stobbe G, Liu Y, Wu R, et al. Diagnostic yield of array comparative genomic hybridization in adults with autism spectrum disorders. Genetics in Med, 2013:10.1038/gim.2013.78

• Taylor JL & Mailick MR. A longitudinal examination of 10-year change in vocational and educational activities for adults with autism spectrum disorders. Dev Psych, 2014, 50: 699-708.

• Taylor JL & Selzer MM. Employment and post-secondary educational activities for young adults with autism spectrum disorders during the transition to adulthood. J Autism Dev Disord, 2011, 41:566-74.

• Taylor JL, Smith LE, & Mailick MR. Engagement in vocational activities promotes behavioral development for adults with autism spectrum disorders. J Autism Dev Disord, 2014, 44: 1447-60.

• Unϋtzer J, Katon W, Callahan CM, et al. Collaborative-care management of late-life depression in the primary care setting. JAMA, 2002, 288(22): 2836-45.

• Wang P. 1 in 68: what do autism’s rising numbers nean for our families? Autism Speaks, 2014, http://www.autismspeaks.org/blog/2014/03/28/1-68-what-do-autism%E2%80%99s-rising-numbers-mean-our-families

• Wehman PH, Schall CM, McDonough J, et al. Competitive employment for youth with autism spectrum disorders: early results from a randomized clinical trial. J Autism Dev Disord, 2013, DOI 10.1007/s10803-013-1892-x

• Transitions Clinical Report Authoring Group. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 2011: www.pediatrics.org/cgi/doi/10.1542/peds.2011-0969