amanda gulsrud, phd: current research on asd in adulthood: the evidence and the unknown

Current Research on ASD in Adulthood: The Evidence and the Unknown

Amanda Gulsrud, PhD

Semel Institute for Neuroscience and Human Behavior University of California, Los Angeles

Overview

Historical perspectives on adults with ASD

Contextual factors related to development Parenting, Schooling, SES, Employment, Health

Interventions and supports Vocational training Social Skills Interventions College and beyond Self-Advocacy

Popular Images of Autism in Media

Almost exclusively focused on early childhood

PresenterPresentation NotesWe are all familiar with these images in the mediaFocus on early childhood.In fact the substantial majority of federal government budget for Asd goes toward genetic research into causes and focus on early identification and intervention- Although we arguably have a long way to go, we know substantially more about the developemnt and interveniton for young children on spectrum.

More recently: Adults with ASD in the Media

The Missing Generation

Diagnostic Boom

Gurney, Fritz, Ness, Sievers, Newschaffer, & Shapiro (2003). Archives of Pediatric and Adolescent Medicine.

1990: beginning of the surge in diagnosis of autism

PresenterPresentation NotesAutism epidemic began in 1990- al those children are now approaching adulthoodCurrent estimates are that roughly 70% of individuals dx with ASD are under the age of 14 yearsHuge public health concern as programs are underdeveloped and underfunded to meet the needs of this growing population

Current age:

87 years old

Current age:

35-45 years old

Current age:

25-30 years old

70% under the age of 14 years old

Kanner 1943

DSM-III 1980

Diagnostic Boom 1990

Current 2016

The tip of the iceberg

PresenterPresentation Notes50,000 individuals with ASD turn 18 each year in the USEstimated lifetime costs of $1.4-2.3 million per individual

Our current understanding Vast majority of individuals with ASD meet criteria for the

disorder across the lifespan In general, overall symptom severity tends to decrease

with age Some evidence that there is less improvement in RRBs

compared to social-communication IQ is the strongest predictor of outcome in these studies Issues of psychiatric and medical comorbidities Little research into establishing evidence-based

interventions and services for this population

PresenterPresentation NotesWhat we know to date on adults with ASD

CONTEXTUAL FACTORS RELATED TO DEVELOPMENT

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Adolescents and Adults with Autism Longitudinal Study- Marsha Mailick Seltzer and Colleagues at the Waisman Center

Prospective, longitudinal study spanning 14 years of development (1998-2015)

Funded by NIH and Autism Speaks Repeated measurement of the mother, father, siblings, and adolescent/adult with autism

Focus on the family context of autism and the life course of the disorder

Natural history study. 406 families recruited from community; ages 10-52 years at entry.

PresenterPresentation NotesMadison, Wisconsin

Time 1 Sample Characteristics Mean age:

22 years (proband) 51 years (mother)

73% male 65% living with parents at Time 1 74% verbal (use of 3+ word phrases) 95% had Autistic Disorder

Change over 10 years in Longitudinal Sample Majority Improved in autism symptoms Majority Improved or remained stable in reported

behavior problems

Improvements in both areas related to two factors: IQ of 70 or higher Higher levels of maternal praise over the course of the study

Parental influences on development even in adulthood!!

PresenterPresentation NotesAutism symptoms: Comparing current ADI-R scores at Time 1 with the data collected 10 years later at Time 8. Behavior problems: Scales of Independent Behavior Revised (SIB-R)- Internalizing, externalizing and asocial behaviors

Generally confirmed the trends emerging in the research

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HIGH SCHOOL TRANSITION

High School Exit

High School Exit : Slowing of Improvement in Longitudinal Sample

Taylor & Mailick Seltzer, JADD, 2010

More severe

Less severe

Autism Symptoms Behavior Problems

Lower income = < 25th percentile Higher income = > 75th percentile

Courtesy of Marsha Mailick Seltzer

PresenterPresentation NotesSub-sample who were in high school when the study began (n = 242)Compared change in autism symptoms and BPs from before to after HS exit (using HLM)Factors predicting change: intellectual disability (ID), family incomeLeaving HS is a significant turning point.Overall pattern of symptom reduction continues but rate of improvement slows after HS exit.Low income adolescents are at greatest risk.Higher income adolescents with ID continue to improve after HS exit link with services?

School and family SES are contextual factors associated with adult development

Chart1

3.6374.317

3.36754.2525

3.0984.188

2.82854.1235

2.5594.059

2.5114.021

2.4633.983

2.4153.945

2.3673.907

No ID

ID

Years Since High School Exit

unconditional models

After Exit

012345678

Internalized Behaviors116.516115.692114.868114.044113.22112.907112.594112.281111.968

Externalized Behaviors107.724107.322106.92106.518106.116105.681105.246104.811104.376

Asocial Behaviors113.654112.856112.058111.26110.462109.861109.26108.659108.058

012345678

Repetitive Behaviors4.1614.0213.8813.7413.6013.5443.4873.433.373

Non-Verbal Communication2.9672.9172.8672.8172.7672.7832.7992.8152.831

Verbal Communication3.7583.6583.5583.4583.3583.2953.2323.1693.106

Social Reciprocity7.8827.7017.527.3397.1587.0887.0186.9486.878


High School Exit

Internalized Behaviors

Externalized Behaviors

Asocial Behaviors

Study years

Behavior Problems

Conditional models - SIBR

High School Exit

Repetitive Behaviors

Non-Verbal Communication

Verbal Communication

Social Reciprocity

Study years

ADI subscale scores

Conditional models - ADIR

SIB-R internalizingAfter Exit

012345678

Low Income with no ID115.17338113.39078111.60818109.82558108.04298108.22574108.4085108.59126108.77402

High income with no ID114.64138113.09878111.55618110.01358108.47098108.18974107.9085107.62726107.34602

Low Income with ID118.45438117.66178116.86918116.07658115.28398115.42674115.5695115.71226115.85502

High income with ID117.92238117.36978116.81718116.26458115.71198115.39074115.0695114.74826114.42702

SIB-R ExternalizingAfter Exit

012345678





SIB-R AsocialAfter Exit

012345678

No ID111.8235110.5185109.2135107.9085106.6035106.3025106.0015105.7005105.3995

ID114.2825113.8315113.3805112.9295112.4785111.8895111.3005110.7115110.1225


Low Income with no ID

High income with no ID

Low Income with ID

High income with ID

Study years



Low Income with ID

High income with ID

Study years

No ID

ID

Study years

Repetitive BehaviorsAfter Exit

-4-3-2-101234

012345678

No ID3.6373.36753.0982.82852.5592.5112.4632.4152.367

ID4.3174.25254.1884.12354.0594.0213.9833.9453.907

Non-Verbal CommunicationAfter Exit

-4-3-2-101234

012345678

No ID2.71652.6652.61352.5622.51052.5072.50352.52.4965

ID3.05953.0292.99852.9682.93752.9512.96452.9782.9915

Social ReciprocityAfter Exit

-4-3-2-101234

012345678

No ID6.76856.4646.15955.8555.55055.4265.30155.1775.0525

ID8.57558.3828.18857.9957.80157.7527.70257.6537.6035

Verbal CommunicationAfter Exit

-4-3-2-101234

012345678

Younger at T1 with no ID3.3433.16442.98582.80722.62862.51192.39522.27852.1618

Older at T1 with no ID3.1832.97242.76182.55122.34062.29992.25922.21852.1778

Younger at T1 with ID4.2614.24444.22784.21124.19464.04193.88923.73653.5838

Older at T1 with ID4.1014.05244.00383.95523.90663.82993.75323.67653.5998

No ID

ID


No ID

ID


No ID

ID


Younger at T1 with no ID

Older at T1 with no ID

Younger at T1 with ID

Older at T1 with ID


Chart1

115.17338114.64138118.45438117.92238

113.39078113.09878117.66178117.36978

111.60818111.55618116.86918116.81718

109.82558110.01358116.07658116.26458

108.04298108.47098115.28398115.71198

108.22574108.18974115.42674115.39074

108.4085107.9085115.5695115.0695

108.59126107.62726115.71226114.74826

108.77402107.34602115.85502114.42702

High School Exit

Lower Income with no ID

Higher Income with no ID

Lower Income with ID

Higher income with ID



After Exit

012345678

Internalized Behaviors116.516115.692114.868114.044113.22112.907112.594112.281111.968

Externalized Behaviors107.724107.322106.92106.518106.116105.681105.246104.811104.376

Asocial Behaviors113.654112.856112.058111.26110.462109.861109.26108.659108.058

012345678

Repetitive Behaviors4.1614.0213.8813.7413.6013.5443.4873.433.373

Non-Verbal Communication2.9672.9172.8672.8172.7672.7832.7992.8152.831

Verbal Communication3.7583.6583.5583.4583.3583.2953.2323.1693.106

Social Reciprocity7.8827.7017.527.3397.1587.0887.0186.9486.878


High School Exit

Internalized Behaviors

Externalized Behaviors

Asocial Behaviors

Study years

Behavior Problems

Conditional models - SIBR

High School Exit

Repetitive Behaviors

Non-Verbal Communication

Verbal Communication

Social Reciprocity

Study years

ADI subscale scores


SIB-R internalizingAfter Exit

-4-3-2-101234

012345678

Lower Income with no ID115.17338113.39078111.60818109.82558108.04298108.22574108.4085108.59126108.77402

Higher Income with no ID114.64138113.09878111.55618110.01358108.47098108.18974107.9085107.62726107.34602

Lower Income with ID118.45438117.66178116.86918116.07658115.28398115.42674115.5695115.71226115.85502

Higher income with ID117.92238117.36978116.81718116.26458115.71198115.39074115.0695114.74826114.42702

SIB-R ExternalizingAfter Exit

-4-3-2-101234

012345678





SIB-R AsocialAfter Exit

-4-3-2-101234

012345678

No ID111.8235110.5185109.2135107.9085106.6035106.3025106.0015105.7005105.3995

ID114.2825113.8315113.3805112.9295112.4785111.8895111.3005110.7115110.1225


Lower Income with no ID

Higher Income with no ID

Lower Income with ID

Higher income with ID




Low Income with ID

High income with ID


No ID

ID


Repetitive BehaviorsAfter Exit

-4-3-2-101234

012345678

No ID3.6373.36753.0982.82852.5592.5112.4632.4152.367

ID4.3174.25254.1884.12354.0594.0213.9833.9453.907

Non-Verbal CommunicationAfter Exit

-4-3-2-101234

012345678

No ID2.71652.6652.61352.5622.51052.5072.50352.52.4965

ID3.05953.0292.99852.9682.93752.9512.96452.9782.9915

Social ReciprocityAfter Exit

-4-3-2-101234

012345678

No ID6.76856.4646.15955.8555.55055.4265.30155.1775.0525

ID8.57558.3828.18857.9957.80157.7527.70257.6537.6035

Verbal CommunicationAfter Exit

-4-3-2-101234

012345678

Younger at T1 with no ID3.3433.16442.98582.80722.62862.51192.39522.27852.1618

Older at T1 with no ID3.1832.97242.76182.55122.34062.29992.25922.21852.1778

Younger at T1 with ID4.2614.24444.22784.21124.19464.04193.88923.73653.5838

Older at T1 with ID4.1014.05244.00383.95523.90663.82993.75323.67653.5998

No ID

ID


No ID

ID


No ID

ID


Younger at T1 with no ID

Older at T1 with no ID

Younger at T1 with ID

Older at T1 with ID


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EMPLOYMENT

Employment in Longitudinal Sample

Taylor & Mailick Seltzer, JADD, 2011

Courtesy of Marsha Mailick Seltzer

Employment Post High School (Shattuck et al., 2012)

2 years post-graduation: Over half of young adults with ASD had neither paid employment nor enrolled in vocational training or college no participation rate higher for ASD than any other disability group

tracked, including ID

6 years post-graduation: Only one third had attended college and only half had ever held a paid job

Influence of family income: One in three employed for families earning less than $25K, and three out of four for families earning more than $75K

Families describe this period post- high school as falling off a cliff because of the lack of services and resources available

PresenterPresentation NotesStudy tracking young adults with ASD over thier first 6 years post-high school

W-ADL Scores for Autism Sample W-ADL Scores for Down Syndrome Sample

Change in Daily Living Skills in Longitudinal Sample

Smith, Maenner & Seltzer, JAACP, 2012 Courtesy of Marsha Mailick Seltzer

PresenterPresentation NotesLatent growth curve modelingCompared to individuals with DSMeasured across 10 yearsThe data suggest the need to focus on acquisition and maintenance of ADL skills for adults with autism.Why do adults with DS (but not autism) continue to improve in ADL skills through adulthood? Possible reflection of difference in service/support landscape for adults with ASD

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HEALTH

Psychiatric and Medical Comorbidities in Longitudinal Sample Any mental health dx 51%

anxiety disorder 29% OCD 25% depression 18% ADHD 16% schizophrenia 1% bipolar disorder 6%

Seizures 22%

Largely preventable causes of death in 19 of the participants (e.g. choking, undetected cancer, accidents)

PresenterPresentation NotesPotentially large cohort effects for IDSeizures: bimodal distribution with onset spikes in early childhood but another in adolescence/young adulthood

Health status in Adults with ASD (Croen et al., 2015) Participants were adult members of Kaiser Permanente

Northern California enrolled from 2008 to 2012 (N=1507) Compared to controls, adults with autism had significantly

increased rates of all major psychiatric disorders including depression, anxiety, bipolar disorder, obsessivecompulsive disorder, schizophrenia, and suicide attempts.

Nearly all medical conditions were significantly more common in adults with autism, including immune conditions, gastrointestinal and sleep disorders, seizure, obesity, hypertension, and diabetes. Rarer conditions, such as stroke and Parkinsons disease, were also significantly more common.

PresenterPresentation NotesStudy conducted by Kaiser Permanente- Northern California

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Summary Reduction in severity of autism symptoms and behavior

problems, on average. Leaving high school is a critical turning point, with an elevation

of risk for those from low income families. Adults with autism are at risk of declining ADL skills in midlife. Low employment and higher education rates

But higher socioeconomic status, positive parenting, and

being in school are associated with more favorable adult outcomes.

INTERVENTIONS AND SUPPORTS

Online survey of transition youth (The University of Miami/NOVA Southeastern University, 2008)

200 families of transition aged-youth 67% of families had no knowledge of available transition

programs and settings 83% relied on family as their primary source of transition

planning support 78% were unfamiliar with agencies or professionals that

might assist with job development 19% of individuals were employed at the time of the

survey and 78% of those were working less than 20 hours per week

85% of individuals still lived with parents, siblings or other family members

PresenterPresentation NotesIDEA- Individuals over the age of 21 are no longer eligible to receive special education services

Report from the Department of Health and Human Services (2004)

Staff turnover rate for programs supporting adults with

developmental disabilities is over 50% Habitual staff vacancy rate is 10-11% This rate is considered debilitating in most other industries Reasons cited: low pay/inadequate benefits, excessive

client to staff ratios ,inadequate training

Vocational skills training Movement toward independence in the workplace-

supported employment rather that center-based employment

Some evidence for the use of behavior modification principles on the job (Hagner and Cooney, 2005)

Local Example: Tranzitions Consulting Evolve program

The EVOLVE program A year-long course

6 months of intensive classroom study 6 months of unpaid apprenticeship experience

Total hours of programming: 588 10 students / 2 classroom instructors 1:2 Job mentor support with instructor consultation : www.tranzitionsconsulting.org

Video clip

College programs Recent report from Bestcollegesonline.com

Top 3 Special College Programs for Individuals with ASD 1. Drexel University Autism Support Program 2. Rutgers Developmental Disabilities Center 3. Mercyhurst College AIM Program

Online college degrees The Achieve Degree at the Sage Colleges

UCLA Program

UCLA Pathways www.uclaextension.edu/pathway

http://www.uclaextension.edu/pathway

Psychosocial Interventions

13 studies identified, only 4 RCTs (Bishop-Fitzpatrick, Minshew & Eack, 2014)

Majority examined social cognition training not ABA, as indicated in child ASD literature

Studies predominantly used computer-based training techniques

Psychosocial Interventions: Social Cognition

Turner-Brown and colleagues (2008) adapted a social

skills intervention designed for adults with psychotic disorders and saw improvement in social cognition but not social functioning

Hillier et al., (2007) improved empathy after an 8-week social and vocational program for young adults

Gantman and colleagues (2012) tested the UCLA PEERS program with young adults and found improvements in self and parent-report of social skills, responsiveness, and frequency of get-togethers

Psychosocial Interventions: ABA and Community-based

5 studies were single case studies of ABA

Targeting decrease in significant problem behaviors (e.g. self injury, genital touching)

Targeting increase of desirable behavior (e.g. social interaction)

Community-based Interventions Supported employment program (Garcia-Villamisar & Hughes,

2007) Increased executive function on cognitive measures

Leisure program (Garcia-Villamisar & Dattilo, 2010 Self-reported decreases in stress and increases in quality of life

PresenterPresentation NotesProblem behaviors: self-injury, genital touching, coprophagiaLarge effect sizes .45 and .83 for Community- based programs

Self-Advocacy groups Autistic Self Advocacy Network (ASAN)

http://autisticadvocacy.org Powerful self-advocacy non-profit run by and for Autistic people Nothing About Us, Without Us!

The Global and Regional Asperger Syndrome Partnership (GRASP) http://grasp.org Autistic individuals and individuals on the autism spectrum

http://autisticadvocacy.orghttp://grasp.org

Affordable Care Act: New Hope? Self-determination waiver initiatives

A potential way that Medicaid funding may flow directly to the adult with ASD and family so that he/she might select, purchase and direct particular services needed at different stages

Currently in the pilot stages to assess feasibility Interested families are selected via lottery system to participate in

the pilot study

A model program: SARRC Southwest Autism Research and Resource Center

Home Based Consultation to develop specific adaptive skills or reduce problem behaviors using principles of ABA

Comprehensive Behavioral Program to meet the complex behavior needs of adults on the spectrum with several 1:1 behavioral sessions and parent training weekly.

Vocational Assessments to help clients better evaluate their strengths, barriers and interests related to employment

Employment Services Program creates partnerships with local and national employers to increase competitive employment opportunities for adults

Transition Academy is a two-year assisted living transition program

Social Enterprise Beneficial Beans Caf

Summary

Longitudinal studies show overall improvement in autism symptomatology and behavior problems but declining adaptive functioning into adulthood

The transition from high school into adulthood is a critical turning point for young adults with ASD Marked by slowing in overall improvement, especially for those

from low-resource communities

A majority of young adults with ASD are unemployed post graduation

Very limited research into psychosocial interventions

Final Thoughts 50,000 individuals with ASD turn 18 in the US every year Programs are underdeveloped and underfunded to meet

the needs of this growing population Research needs are great, including:

A need to understand the kinds of services that support successful transition into adulthood

A need to develop effective interventions and support services with an emphasis on employment opportunities

Special focus on helping low-resource youth overcome barriers to access

Silver lining may be the recent surge in interest into research, service and support at both local and national levels

Thank you!

[email protected]

Current Research on ASD in Adulthood: The Evidence and the Unknown OverviewSlide Number 3More recently:Adults with ASD in the MediaDiagnostic BoomThe tip of the icebergOur current understanding Contextual factors related to developmentSlide Number 9Adolescents and Adults with Autism Longitudinal Study- Marsha Mailick Seltzer and Colleagues at the Waisman Center Time 1 Sample CharacteristicsChange over 10 years in Longitudinal SampleSlide Number 13High School transitionHigh School Exit : Slowing of Improvement in Longitudinal SampleSlide Number 16EmploymentEmployment in Longitudinal SampleEmployment Post High School(Shattuck et al., 2012)Change in Daily Living Skills in Longitudinal SampleSlide Number 21HealthPsychiatric and Medical Comorbidities in Longitudinal SampleHealth status in Adults with ASD (Croen et al., 2015)Slide Number 25SummaryInterventions and SupportsOnline survey of transition youth(The University of Miami/NOVA Southeastern University, 2008)Report from the Department of Health and Human Services (2004)Vocational skills trainingThe EVOLVE programVideo clipCollege programsPsychosocial InterventionsPsychosocial Interventions: Social CognitionPsychosocial Interventions: ABA and Community-basedSelf-Advocacy groupsAffordable Care Act: New Hope?A model program: SARRCSAARCSummaryFinal ThoughtsThank [email protected]

amanda gulsrud, phd: current research on asd in adulthood: the evidence and the unknown

Health & Medicine