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Adults with Autism 

W.David Lohr, M.D. 

Assistant Professor Child Psychiatry 

Co-Clinical Director University of Louisville Autism Center 

University of Louisville School of Medicine 

wdlohr01@louisville.edu 

502-852-6941 

 


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Objectives and Disclosure 

.illustrate the various clinical features of adults with 
autism 
.Review genetic and imaging studies which reveal clues 
about etiology and pathophysiology 
.Discuss outcome data for adults with autism 
.Review treatment approaches 
.Review local delivery of care issues 
.No disclosures to report 



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Prevalence continues to grow 

.Current CDC estimates 1 in 88 children aged 8 years 
have an autism spectrum disorder 
.1 in 54 boys 
.1 in 252 girls 
•(March 30 issue of CDC publication 
Morbidity and Mortality Weekly Report). 
MMWR 2012; 61:1-24. 












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Number of publications on ASD 
according to age. Mukaetova-Ladinska, E. B., et al. 
(2012). Int J Geriatr Psychiatry 27(2): 109-118. 

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NHS NICE clinical guideline for 
adults with ASD 

.Identification of clinical symptoms 
.Quick screen and comprehensive evaluation 




.Evidence based interventions including those for 
challenging behavior 
.Assessment and interventions for families 
.Organization and delivery of care 
.Local care pathways, clinical teams 


.http://www.nice.org.uk/nicemedia/live/13774/59685/59685.pdf 


 


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Social impairment is distributed 
in the population. Constantino et al, JAACAP. 2003 
Apr;42(4):458-67. 

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Diagnosis of ASD in adults. 

.ADOS module 4 tested in adult males with ASD 
.Bastiaansen, et al. 2011, J Autism Dev Disord, 41(9), 1256-66. 
.Brugha, et al, 2012. Psychol Med, 42(3), 647-56. 








.SRS-A 
.a mean total score of 78.5 in ASD sample, 63.4 in mixed 
psychiatric sample, and 55.5 in typically developing adults. 
.Bolte, 2012, J Autism Dev Disord, 42(9), 1998-9. 










 


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http://docs.autismresearchcentre.com/tests/AQ10.pdf 


 
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Age-related brain changes in 
autism 

.586 MRI scans from 259 patients from age 1 year to 50 
years 
.Early brain overgrowth 
.Accelerated decrease in brain volume in ASD 
.Neuronal loss 
.Age related degeneration, (gene expression) 
.Courchesne, E., et al. (2011). "Brain growth across the life span 
in autism: age-specific changes in anatomical pathology." Brain 
Res 1380: 138-145. 











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COURCHESNE, et al., 2011 Brain Res, 1380, 138-45. 


 
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Brain surface anatomy and adults 
with ASD. 

.MRI study of 89 men with ASD and 89 controls, mean age 
26-28. 
.Regional differences in brain volume correlated with 
severity of symptoms measured by ADOS and ADI-R 
.“atypical neural connectivity” 
.Ecker, C., et al. (2012). "Brain anatomy and its relationship to 
behavior in adults with autism spectrum disorder: a multicenter 
magnetic resonance imaging study." Arch Gen Psychiatry 69(2): 
195-209. 











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Cortical Thickness and Surface 
Area in Adults with Autism 

.MRI study of 84 men with ASD and 84 controls, mean age 
26-28 years 
.Increased cortical thickness in frontal lobe 
.Reduced surface area in orbitofrontal cortex and 
posterior cingulum 
.Ecker, C., et al. (2013). "Brain surface anatomy in adults 
with autism: the relationship between surface area, 
cortical thickness, and autistic symptoms." JAMA 
Psychiatry 70(1): 59-70. 











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fMRI of age related changes in 
autism 

.Meta-analysis of child vs. adult fMRI studies: N=18 child vs. 
n=24 adult studies 
.Neural changes are not static, 
.Frontal-temporal-parietal neurocircuitry involved in pathology 
of ASD 


.Changes are likely well established before the current 
minimum age for fMRI studies, age 7. 
.Dickstein, D. P., et al. (2013). "Developmental meta-analysis of 
the functional neural correlates of autism spectrum disorders." 
J Am Acad Child Adolesc Psychiatry 52(3): 279-289 e216. 









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Social task: youth vs. adults with ASD show hyper activation of 
L. post-central gyrus and hypo activation in R. hippocampus and 
R. superior temporal gyrus 



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Age-Dependent Brain Gene 
Expression and CNV in autism 

.Study of 57 frozen samples of dorsolateral prefrontal cortex, 
compared autism cases vs. normal controls 
.Abnormal gene pathways in early stages of development could 
lead to early brain overgrowth and later thinning 
.Genes involved in cell number, genetic integrity and neural 
patterning are dysregulated in children < 14 years, N=102 
genes 
.Genes regulating signaling, cell differentiation, repair, and 
apoptosis are dysregulated in adults, n=730 genes 
.Chow, M. L., et al. (2012). "Age-dependent brain gene 
expression and copy number anomalies in autism suggest 
distinct pathological processes at young versus mature ages." 
PLoS Genet 8(3): e1002592. 











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Microglial activation in young adults 
with ASD Suzuki, K., et al. (2013). "Microglial activation in young adults 
with autism spectrum disorder." JAMA Psychiatry 70(1): 49-58. 


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What studies of adults may tell us 
about etiology of ASD 

.ASD reflects an innate process beginning likely in prenatal 
phase and continuing throughout life. 
.Early brain overgrowth followed by corrective remodeling 
phase – (overpruning, atrophy) 
.Regional differences in brain volume may be correlated with 
severity of symptoms 
.Age-dependent genetic expression alterations may underlie 
differences in anatomy and cellular pathways in ASD. 
.Evidence of immune dysregulation in a subset of ASD 
.ASD is a disorder of multiple causes, various phenotypes with 
findings of subtle differences in large-scale neural systems. 



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Savant skills in autism 

.In n=137 individuals, mean age 24 years 
.39 (28.5%) met criteria 
.15 had cognitive skill, e.g. Block design 
.16 had savant skills e.g. Mathematical/calculating skill 
.Seen in 33% of males vs. 19% of females 
.Not seen with non-verbal IQ < 50 or high rates of RRB 
.HOWLIN, P., et al. 2009. Philos Trans R Soc Lond B Biol 
Sci, 364, 1359-67. 










 


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Aging and autism: Executive 
Function, (EF) and memory 

.Neuropsychological testing in autism vs. controls, mean 
age 63 years 
.Various measures 




.EF deteriorates in normal adults but there are some 
differences for adults with autism 
.Geurts, H. M. and M. E. Vissers (2012). "Elderly with 
autism: executive functions and memory." J Autism Dev 
Disord 42(5): 665-675. 











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Those with autism had preserved scores of verbal 
fluency but greater loss of visual memory 


 
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Adults with autism vs. controls 
have: 

.Increased utilitarian judgments and decreased 
emotional reaction to moral dilemma Gleichgerrcht 2012 
.Less social influence on donations to charity Frith 2011 
.Decreased eye gaze and measures of eye contact 
.Decreased attention to biologic motion Kaiser 2012 and Ohta 2012 



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Adults with autism vs. controls 
have: 

.Decreased ability to detect dialect Clopper 2012 
.Altered gender coherence Bejerot 2012 
.Altered memory function 
.Prospective memory, working memory, autobiographical, 
spatial memory 






.Errors in executive function Fan 2012 and use of inner 
speech in planning Williams 2012 



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Adults with autism vs. controls 
have: 

.Decreased fMRI response to pleasant stimuli but greater 
response to unpleasant stimuli Cascio 2012 
.Increased valence ratings for images of 
circumscribed interests and decreased ratings for 
social images Sasson 2012 
.Altered scores on overall taste and bitter, sweet, 
and sour tastes Tavassoli 2012 



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Adult outcome of autism 

.Less than 20% have a good or very good outcome 
.48% live with parents 




.42% have some employment (paid, sheltered, volunteer) 
.15% in a long-term relationship 
.Factors affecting outcome 
.IQ 
.early language development and good verbal IQ 
.level of autistic severity 
.mental health or medical problems 
.Level of social support 
.Howlin, P. and P. Moss (2012). "Adults with autism spectrum disorders." 
Canadian Journal of Psychiatry - Revue Canadienne de Psychiatrie 57(5): 
275-283. 











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Adult outcome of autism 

.Psychiatric illness – 25% to 30% 
.Risks include major transitions and social isolation 






.Increased mortality, esp. in women, epilepsy, severe ID 
.Epilepsy in up to 39% 
.Increased family stress 
.Will early diagnosis and intervention efforts show an 
effect? 
.Howlin, P. and P. Moss (2012). "Adults with autism spectrum 
disorders." Canadian Journal of Psychiatry - Revue Canadienne de 
Psychiatrie 57(5): 275-283. 









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Developmental trajectories daily living 
skills in autism Smith et al, 2012. JAACAP, 51, 622-31. 


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Caregiver burden 

.Caregiver burden was greater in ASD and explained by 
caregiver estimate of unmet needs 
.social contact, depression, anxiety, daytime activities, safety of 
self, and communication 
.Similar to estimates of those caring for those with TBI or dementia 
.Bruder, M. B., et al. (2012) J Autism Dev Disord 42(11): 2498-
2504. 








.Mothers of adolescents and adults with ASD 
.report more stressful events on any given days 
.Smith, et al. (2012). J Autism Dev Disord 42(9): 1836-1846. 






.have more health problems and hypo activated cortisol levels. 
.Seltzer, et al. (2010). J Autism Dev Disord 40(4): 457-469. 











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Health-care experiences of adults 
with ASD 

.Online survey of n=437 subjects (209 autistic and 228 
non-autistic) 
.Community-based participatory research method 






.persons with autism report: 
.lower satisfaction 
.Higher odds of unmet healthcare needs 
.lower rates of preventive health measures 
.more likely to use the emergency room than non-autistic 
adults. 
.Nicolaidis, C., et al. (2012). "Comparison of Healthcare Experiences 
in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey 
Facilitated by an Academic-Community Partnership." J Gen Intern 
Med. 









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Physician needs in treating those 
with ASD 

.Written survey of primary care MDs in CT 
.Most common visit was annual checkup 32.1%, mental 
health needs were seen in 21.9%, care involved family 
or caretaker in 54.7% of visits 
.36% of MDs reported some training in caring for adults 
with ASD 
.>50% wanted more training in form of workshops or 
conferences 
.Bruder, M. B., et al. (2012). "Brief report: the medical care of 
adults with autism spectrum disorders: identifying the needs." J 
Autism Dev Disord 42(11): 2498-2504. 









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Treatment goals for adults with 
ASD 

.Employment and financial stability 
.Independent living skills/quality of life 
.Social connection 
.Medical health 
.Mental health 


 


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Medication and adults with 
autism 

.5-year study of adolescents and adults with ASD 
.70% of adults with ASD were taking psychotropic 
medication 
.38% antipsychotics, 44% antidepressants, 31% 
anticonvulsants 
.Mean # of meds/person = 2.9 
.Only 4.2% of those medicated at start were off medications 
at end of study 
.Esbensen, A. J., et al. (2009). "A longitudinal investigation of 
psychotropic and non-psychotropic medication use among 
adolescents and adults with autism spectrum disorders." J 
Autism Dev Disord 39(9): 1339-1349. 











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Systematic review of medication data in 
adults with autism Dove, D., et al. (2012). "Medications for 
adolescents and young adults with autism spectrum disorders: a systematic review." 
Pediatrics 130(4): 717-726. 

.8 studies identified, 4 had fair quality 
.Moderate evidence for aggression in risperidone but 
strong evidence for sedation and weight gain 
.Negative study for naltrexone in mixed population of 
adults with ID. Willemsen-Swinkels, et al. (1995). Arch Gen Psychiatry 52(9): 
766-773. 
.RCT of fluvoxamine on repetitive behavior and 
aggression McDougle, et al. (1996). Arch Gen Psychiatry 53(11): 1001-1008. 



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Oxytocin 

.Case for oxytocin 
.RDBPC 6 week trial of intranasal oxytocin of 19 adults 
with ASD 
.Mean IQ 107, 24 iu oxytocin bid 
.No changes in primary outcome (social function/cognition and 
repetitive behaviors) 
.Some changes in secondary measures (social cognition, quality 
of life, and stereotypies) 
.Irritability 
.Anagnostou, E., et al. (2012). "Intranasal oxytocin versus 
placebo in the treatment of adults with autism spectrum 
disorders: a randomized controlled trial." Mol Autism 3(1): 16. 











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Fluoxetine may decrease repetitive 
behaviors in adults 

.N=37 adults with ASD, mean age 34.3 years, 92% high 
functioning 
.Mean dose 65 mg/day, 12 week DBPC 
.35% of those in a flouxetine group showed symptom 
improvement compared to 0% in the placebo group 
.50% of group showed improved measures on compulsion 
scale of YBOCS compared to 8% in placebo group 
.Hollander, E., et al. (2012). "A double-blind placebo-controlled 
trial of fluoxetine for repetitive behaviors and global severity in 
adult autism spectrum disorders." Am J Psychiatry 169(3): 292-
299. 











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Shattuck, P. , et al. (2011). Arch Pediatr Adolesc Med 
165(2): 141-146. 

 
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Service use in young adults with 
ASD at transition 

.National telephone survey of parents and guardians of young 
adults with ASD aged 19 to 23 years who had received special 
education, NTLS2 study 
.Rate of services within 2 years of leaving high school 
.41.9% received case management 
.Lower rates among youths with higher functional skills and low 
income 


.35.0% received mental health services, 9.1% received speech 
therapy 
.39.1% of youths with ASD received no services 
.More likely with African Americans and those with low income 
.Shattuck, P. T., et al. (2011). "Post-high school service use among young adults with 
an autism spectrum disorder." Archives of Pediatrics & Adolescent Medicine 165(2): 
141-146. 









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More NLTS-2 data 

.34.7% of youth with ASD will attend college and about 
55% have held paid employment within 6 years of HS 
.More than 50% had no participation in employment or 
education. 
.80% continue to live at home, 6% have competitive jobs 
.Higher income and functional level increases outcome 
.Shattuck, P. T., et al. (2012). "Postsecondary education and employment 
among youth with an autism spectrum disorder." Pediatrics 129(6): 1042-
1049. 


.Nearly 40 percent of young adults with autism never saw 
friends and 28 percent had no social contact at all. 
.Orsmond, et al. (2013). J Autism Dev Disord. 











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STEM participation 

.NLTS-2 data of 11,000 students with IDEA disabilities; 
1,100 students with autism category 
.Those with autism had highest rates of STEM (34.31%), 
but college rates was third lowest, (14.95% in 4-year 
program) 
.Risks for not attending college for those with autism 
.ID, poor income, female 
.Wei, X., et al. (2012). "Science, Technology, Engineering, and 
Mathematics (STEM) Participation Among College Students with an 
Autism Spectrum Disorder." J Autism Dev Disord. 









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Treatment data for vocational interventions 
in adults with ASD 

.Limited data, poor study quality, 5 studies identified 
.Supported employment may improve quality of life and 
cognitive functioning 
.68% remained employed at 8 years 


.Need better data, impact analysis, factors affecting 
outcome 
.Taylor, J. L., et al. (2012). "A systematic review of vocational 
interventions for young adults with autism spectrum disorders." 
Pediatrics 130(3): 531-538. 









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Other treatment outcome data 

.Study of 382,221 adults in the US Vocational 
Rehabilitation System up to 2005 
.Adults with ASD were more likely to be denied services 
.Among those served, adults with ASD had the most 
expensive set of services 
.Lawer, L. et al. 2009. J Autism Dev Disord 39(3): 487-494. 










 

 


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School transition planning 

.Transition services include: 
.education after high school, 
.job training and opportunities, 
.case management, 
.training for living independently, 
.recreation and volunteer opportunities. 




.Successful transitions 
.Based on needs, preferences, skills 
.Oriented to life after school 
.Starts early 





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KATC family guide 

.Division of Developmental and Intellectual Disabilities (DDID) 
evaluation 
.Community Mental Health Center or DIDD to determine eligibility 
for services, including Medicaid and waiver services 
.Service and support administrator appointed as case manager 




.SSI 
.College disability programs 
.Directive documents 
.Advisory team 
.Guardianship, estate planning, and trust 



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http://www.autismspeaks.org/family-
services/tool-kits/employment 

 The Employment Tool Kit is divided 
into the following sections: 
Introduction 
Self-Advocacy 
What Job is Right For You? 
Benefits and Funding 
Employment Models: What Option is 
Best For You? 
Your Job Search 
Transportation Options 
Resumes, Cover Letters and 
Applications 
The Job Interview 
Accommodations and Disclosure 
Soft Skills: Understanding the Social 
Elements of Your Job 
Success Stories and Lessons Learned 
My Employment Rights 
Glossary of Terms 
Employment Resources 
Step-by-Step Guide to Your 
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Adults with autism face a lack of 
services 

.There are limited facilities with programs and providers 
.School services end. 
.Impact and Impact Plus age out at 21 years 
.Case management 
.After school programs 
.Crisis stabilization 
.OT, PT, SLP 




.Private insurance ages out at 25 years. 



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Support for Community Living, SCL 

.Requires eligibility for ICF/MR, Long waiting list 
.Residential support 
.Case management 
.Community supports, respite 
.OT, PT, SLP 
.Day programs 
.Supported employment 



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Michelle P Waiver 

.Caps at 10,000 individuals at $40,000/year 
.Similar services at SCL except residential care is not 
covered 
.Case management 
.Respite, CLS 
.OT, PT, SLP 
.Consumer Directed Option (CPO) 
.Lack of providers 



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Needs 

.Strategies to increase quality of life and improve 
functioning of those with ASD later in life 
.Research on effective interventions in the area of 
supported employment, social skills interventions, 
medication, respite, etc. 
.Transition clinical teams and interagency collaboration 
.Family-based interventions to decrease the burden and 
connect to resources 
.Parent advocacy and legislative changes to increase 
funding 



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Summary 

.Studies of adults with autism offer insight into later-
stages of life-long process 
.Prenatal origins 
.Genetic, neuroimaging, clinical, psychological findings 


.Current services for adults with autism are inadequate 
.Effective therapies have yet to be determined 


.Transition services are critical for successful adaptation 



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