Adolescent Transition in ASD: An Introduction Gary Stobbe, MD Clinical Associate Professor UW Depts. Of Neurology & Psychiatry March 30, 2020 “Jameses Guys”
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Adolescent Transition in ASD:
An Introduction
Gary Stobbe, MD
Clinical Associate Professor
UW Depts. Of Neurology & Psychiatry
March 30, 2020
“Jameses Guys”
Disclosures
Dr. Stobbe has no disclosures or conflicts of interest related to today’s presentation
Objectives
• Review ASD outcome trajectories and recognize factors influencing progress seen in adulthood
• Define success as an adult with ASD and identifying barriers to this success
• Review key elements and strategies that can improve quality of life for adults with ASD and their families
“Metal Sky”by Forrest Sargent
BackgroundAndOutcome in ASD
Andrew Mitomitosanpaints.com
- 50,000 individuals with ASD enter adulthood in the US annually (Wang, 2014)
The autism “epidemic”
Studies are prevalence (not incidence) studies
Factors influencing rise in prevalence (Graf, 2017)
Broader diagnostic criteria (diagnostic expansion)
Inclusion of “syndromic” forms (diagnostic inclusion)
Diagnostic substitution (e.g. - ID↔ASD)
Increased awareness (and reduced stigma)
Linking of services to diagnosis (coupling)
Overdiagnosis
“nothing about us without us”
Autism as an identity
Social justice model
Importance of self-advocacy
Policy
Research study design
Emphasis on QoL, not “cure”
Outcome Trajectories in ASD
20% poor outcome
60% moderate progress
20% optimal outcome
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)
“catching up” in young adulthood
“falling behind”
“catching up”
Typical
DD
The “risk zone” of transition
“falling behind”Typical
DD
Poortransition
Hanging Out by Fareyza “Rey” Daoed
Factors Influencing Outcome in ASD
Factors influencing positive outcomes as adults
Factors influencing outcome
Intrinsic Cognitive ability (IQ plus) Core features (social,
communication, behavior/interests)
Co-occuring conditions Adaptive/daily living skills Specific disruptive behaviors
(hygiene, aggression, etc.)
Extrinsic Socioeconomic Family/community support Access to services
Services including
Therapy Applied behavioral analysis
(ABA) Speech/OT Special education Caregiver mediated Counseling Medication
Support Ed/work accommodations Transition Work training Community/state services
What is High-Functioning Autism?
Lay definition similar to “Asperger’s”
Research definition – IQ > 70
Some also include absence of underlying syndromes
Are all individuals with normal range IQ functioningat a “high” level? (short answer is no)
Term “high-functioning autism” has fallen out of favor
“high-functioning” ≠ high outcome
Employment 4.1% - 11.8% regardless of ID (Taylor & Selzer, 2011)
Lower rates compared to other DDs (Shattuck, 2012)
Decline in employment status over time
Unemployment and under-employment
Post-secondary education (Shattuck, 2012) 36% attend post-secondary education (70% 2-year colleges)
Community outings and social events (Myers, 2015) Over 50% of ASD adults (age 21-24) report no community
participation
UW Medicine Adult Autism Clinic
Seeking Dx ASD p value
Age in years 29 (18.5)* 22 (6)* <0.001
In person visits 1.6 (1.8)* 2.3 (2.3)* <0.01
Phone visits 0 (0)* 0 (1.9)* <0.001
Independent Employment 36% 13% <0.001
Living Independently 41% 8% <0.001
Well established care 85% 95% =0.002
Behavioral Medication 46% 75% <0.001
Antispychotic 7% 38% <0.001
Antidepressant 36% 52% <0.01
Tolson, 2015 *Medians and interquartile range
“autistic burnout”
Cognitive fatigue from “masking”
Reduces potential for FT employment
Autistic Burnout: An Interview With Researcher Dora Raymaker, PhD
http://www.thinkingautismguide.com/2019/08/autistic-burnout-interview-with.html
Similar phenomenon of cognitive fatigue seen with acquired central nervous system conditions (TBI, multiple sclerosis)
Advice from self-advocates – “don’t just focus on the weaknesses”
…and help me to self-advocate!
Adult Transitionfor Youthwith ASD
“Trash Guys”
by Wil Kerner
“What is our goal?”
ImprovingQuality of Life
Quality of life is interconnected with all aspects of health and community involvement
Roux et al, 2015
Transition planning
Only 58% of youth with autism have a transition plan
Race disparity – 60% transition planning for whites, only 46% for blacks
As a result, over one-third of adults in their 20’s “disconnect” and do not participate in school or get a job (compared to 8% for learning disabled, emotional disturbance, or speech/language impairment)
Roux et al, 2015
Successful Transition – Importance of “Case Management”
National Longitudinal Transition Study (NLTS-2)
Household income and “case manager” at wave 1 influenced community participation as an adult (defined as ANY participation outside of school in prior 12 months)
“case manager” at wave 1 influenced social participation as an adult (defined as ANY get together, social event, or phone call to friend in prior 12 months)
CP - “has youth participated in community activities in the last 12 months”SP – “get togethers, invitations, or phone calls in the last 12 months”
Myers, 2015
Barriers to Success
Workforce shortage Physicians serving adults with ASD, only 20% received
training during residency (Bruder, 2012)
Parents view PCPs as unable to assist vast majority of autism-related problems (Carbone, 2013)
Lack of transition tools for pediatric providers
Parents/caregiver “burnout” anxiety about future planning
Financial barriers
Who is the “case manager?” Parent? Provider? School? The individual?
Transitions Clinical Report Authoring Group, 2011
“Rock Alone”By Forrest Sargent
“Not everything that steps out of line, and thus ‘abnormal,’must necessarily be ‘inferior.”
- Quote of Hans Asperger, 1938 (from NeuroTribes by Steve Silberman)
Therapeutic Options in Adult ASD
Transition to Adulthood – Chester’s Story
29 yo male Diagnosed with ASD age 5
Minimally verbal
Regression began around age 19 Resurgence of aggression
and property destruction (symptoms from earlier years returning)
Living with mom, sibs off to college
Why the regression?
https://pulse.seattlechildrens.org/sewing-a-seamless-transition-for-chesters-autism-care/
Therapeutic Options in Adult ASD
• Applied Behavioral Analysis (ABA)• Speech therapy
– Pragmatic language
• Occupational therapy– Sensory processing– Adaptive skills
• Individual counseling (CBT/DBT/mindfulness)– Executive functioning– Emotional regulation
• Group counseling– Social skills
• Managing co-occuring conditions– Mental health– Physical health (wellness, obesity, sleep, epilepsy, GI)
• Vocational counseling/employment• Community participation
Psychiatric Comorbidities in Autism
ADHD
Anxiety Disorders
Depression and Suicide
Bipolar Disorder
Obsessive-Compulsive Disorder
Psychotic Disorders
Catatonia (more in genetic syndromes)
Disruptive Behavior (unspecified)
Mental Health in ASD
Inpatient hospitalization tripled between 1999-2009 for adolescents with ASD (Nayfack, 2014) Risk for psychiatric hospitalization, age 5-21 (Mandell, 2008)
Aggressive behavior, single-parent home, depression diagnosis, and self-injurious behavior
53% of total annual cost of healthcare for a child with ASD is incurred by 10% of the ASD population (Croen et al, 2006) For those 10%, psychiatric hospitalization was 28% (0.6% for the remaining
90%) Risk for psychiatric hospitalization, age 5-21 (Mandell, 2008)
Suicidal ideation Suicide attempts 4-fold increase in ASD (Croen, 2014) 10x higher for HFA
Depression and anxiety increased in ASD vs. DD/non-ASD (Gotham, 2014)
Co-occurring conditions worsen ASD
Inattention
Anxiety
Impulsivity
Hyperactivity
DepressionIrritability
Aggression
Self-injury
Tantrums
Repetitive/Ritualistic behaviors
Tics
Treatment is often aimed at reducing associated symptoms that interfere with functioning and may also be exacerbating core deficits.
Social/comm deficits
Obsessions/compulsions
Sleep disruption
Depression and Anxiety in ASD
May be provoked by awareness of difference, increasing academic and social demands.
May present as
fearfulness, irritability, tantrums, self-injurious behaviors, aggression, obsessive questioning, repetitive behaviors, etc.
ASD can mask and/or compound symptoms
Psychotropic Trends in ASD
No medications proven effective in treating core symptoms of ASD
Medication are commonly used in ASD 80% of adults
Use of medications increases with age Once medications are used, they are more commonly
continued Atypical antipsychotics, SSRIs, and stimulants most
commonly used (Esbensen et al. 2009) Increased side effects (start low, go slow)
ASD Employment
Employment rates 4.1% - 11.8% regardless of ID (Taylor & Selzer, 2011) Lower rates compared to other DDs (Shattuck, 2012)
Decline in employment status over time Unemployment and under-employment
Taylor study (2014) - Greater vocational independence relates to - subsequent reduction in autism symptoms Reduced maladaptive behaviors Increase in ADLs The reverse does not hold true – autism severity does not correlate
with having a job Conclusion - The job is the treatment!
Factors influencing success
Factors influencing successful employment (Hedley, 2016)
Older age
Post-secondary education
Absence of co-occurring conditions
Receipt of support
To disclose or not disclose? (Ohl, 2017)
Disclosing – 3X more likely to be employed
Multicultural survey – US, Sweden, Australia
Choosing a job – Matching skills/abilities
Interview skill training/preparation
Stakeholders felt disclosing diagnosis not critical, while employers felt important
Getting a job Teaching employer is important
Work experience
Educating staff less important
Keeping a job Focus on strengths
Education/understanding of ASD in the workplace
Mentor or formal support can help
Bolte, INSAR Meeting, 2018
Hyperfocused vs. Preferred Interests –when is it a good thing?
“special interest areas”
Sciences, history & culture, animals, information and mechanical systems, belief systems, machines and technology
Improves joint attention, social interaction, and anxiety
62% of adults feel focusing on preferred interests has helped not hindered success (majority of these individuals were high functioning and diagnosed as an adult)
Only 10% felt their teachers were supportive of their preferred interests
Koenig, 2017
Community Participation
How is Chester now?
Happy, still living with mom
Low dose SSRI helped
Attends classes regularly at the ABC (music, art, swim)
His music therapist says -“Chester always had great rhythm and an affinity for music. His focus and creative expression has grown remarkably in the past years, allowing him to confidently and successfully participate in music classes, while increasing awareness of his peers and building beautiful friendships with them!”
References
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
Croen LA, Najjar DV, Ray GT, et al. A comparison of health care utilization and costs of children with and without autism spectrum disorders in a large group-model health plan. Pediatrics, 2006 Oct; 118(4):e1203-11.
Esbensen AJ, Greenberg JS, Seltzer MM, et al. A longitudinal investigation of psychoactive and physical medicaltion use among adolescents and adults with autism spectrum disorders. J Autism Dev Disord, 2009, 39:1339-49.
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.
Graf WD, Miller G, Epstein LG, et al. The autism “epidemic”: ethical, legal, and social issues in a developmental spectrum disorder. Neurology, 2017 Apr 4; 88(14):1371-80.
Hedley D, Uljarevic M, Cameron L, et al. Employment programmes and interventions targeting adultswith autism spectrum disorder: a systematic review of the literature. Autism, 2016, DOI:10.1177/1362361316661855.
Helt M, Kelly E, Kinsbourne N, et al. Can children with autism recover? If so, how? NeuropsychologyReview, 2008, 18:339-66.
Koenig, KP & Williams, LH. Characterization and utilization of preferred interests: a survey of adultson the autism spectrum. Occupational Therapy in Mental Health, 2017, DOI:10.1080/0164212X.2016.1248877.
Mandell DS. Psychiatric hospitalization among children with autism spectrum disorders. J Autism DevDisord, 2008; 38:1059-65.
References (cont.)
Myers E, Davis BE, Stobbe G, et al. Community and social participation among individuals with autism spectrum disorder transitioning to adulthood. J Autism Dev Disord, 2015 Aug; 45(8):2373-81.
Nayfack AM, Huffman LC, Feldman HM, et al. Hospitalizations of children with autism increased from 1999 to 2009. J Autism Dev Disord, 2014 May; 44(5):1087-94.
Ohl A, Sheff G, Little S, et al. Predictors of employment status among adults with autism spectrum disorder. Work, 2017 Feb 17; 56(2):345-55.
Roux, A.M., Shattuck, P.T., Rast, J. E., Rava, J. A., and Anderson, K.A. (2015). National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University.
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.
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 & 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.
Tolson, D., Webb, S., Stobbe, G. et al. Opening an adult autism clinic: understanding patient needs. Accepted for poster presentation, International Meeting for Autism Research, Salt Lake City, May 2015.
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
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