Eaves, L.C., and Ho, H.H. (2008).  Young adult outcome of autism spectrum disorders.  JADD, 38, 739-747.

• most of the autism literature - intervention, identification, and assessment
• little information on adulthood
  • information is either old or only on HFA
  • transition is thought to be confusing and limited in its scope and sequence (Gearhart & Holmes 1997)
  • little information causes great anxiety
• most studies - anecdotal, varied sample size and difficult to interpret
• early work -60-75% poor or very poor outcomes
  • 50-75% lived in institutions
  • little voc and residental services
  • some improvement in services over the years
  • Kanner - not good in adulthood
• Higher functioning - IQ higher than 70 - better outcome
  • not necessarily consistent in reports
  • Howlin et al. 2004
• most had few close friends, dependent, and emplyment was low (Howlin 2000)
• Engstrom et al (2003) - most Dx after childhood
• Behavior issues - most likely ongoing but now more difficult to handle
• 40% epilepsy before age 30 - more likely in lower functioning
  • more likely to have anxiety and depression
  • outcome might be related to language skills
  • outcome tends to be negative
• services - adults with ASD fall through the cracks
  • behavioral disability or intellectual disability?  What agency? (Barnard et al. 2001)
• Billstedt et al is referenced quite a bit - see that review for more information
• Ellison et al 2005) - Canadian telephone interview
  • 15 families of adults
    • most lived at home
    • 1-2 friends
    • 41% part time emplyment
    • most found speech therapy, medication and skill building the most helpful
• research consensus - language development and IQ greatest predictors of outcome
  • outcome has improved over the years
    • better services
    • better schools
    • less institutionalization
    • more postsecondary services
  • more kids Dxed with ASD - more kids will need services
    • what's happening now, and how can we inform planning?
• current study - what are adults with ASD getting in terms of
  • health
  • physical activity
  • education
  • social
  • quality of life (not measured with the typical means)
    • authors expected better outcomes than past studies
  • how did outcome compare with earlier assessments
  • what are the needs that are met and what are the needs that are unmet?
• Method - adults born from 1974-1984 - all IDed as preschoolers
  • follow up assessment around 111/2 years
  • 48 (63%) participated in a follow up survey in adulthood (family responses)
  • 79% mothers
    • CARS and IQ administered in early childhood and "adolescence"
    • interview as adults - most rating scale, some open-ended questions
      • created an overall outcome rating (OOR)
      • lower scores = better outcomes
        • work ratings
        • friendship ratings
        • independence ratings
  • Participants - most were Dxed using the Rutter criteria
  • 57% had ASD, the rest had a related disorder such as PDD
  • mean CARS 34.4 - not much difference between preschool and adolescence
  • IQ - whatever was the appropriate IQ test (Weschler, Bailey, Leiter)
    • half less than 50 on verbal IQ
    • Nonverbal IQ - 61% scored less than 50
      • similar in adolescence
• Results
  • mean age at follow up - 24 years old
  • mean OOR 6.79
    • good or very good 21%
  • 62.5% had emotional or psychiatric issues
  • 58% were on medication - 39.5% on psychotropic medications
  • lower functioning - more likely to have a seizure disorder
  • all went to regular schools and were in SPED
    • high school - 69% were in SPED
    • 77% had aides
    • 33% could not read at high school level
    • 35% could not write
    • 42% could not do any math
      • none had a college degree
  • 56% had been employed
    • mostly volunteer work or sheltered
    • only two were independently employed
  • 56% lived with families
    • 35% were in group homes
    • 79% received some sort of government aid
      • 56% respite care
      • 40% attended a day center
  • 33% had at least one friend
    • 85% had a hoppy
    • 30% attended social, church or club on a regular basis
    • 10% had romantic relationships
    • 71% reported good to excellent relationships with family
    • 69% were not limited due to behavioral converns
  • 46% did moderate/vigorous activity at least 1x/week
    • 85% walked
    • most commonly reported: lack of evnergy, disability, cost, no leader, no athletic ability
  • Quality of life - 5.2 on a 1-10 scale
    • most had good to excellent health
    • 42% had difficulty with hygeine
      • 58% independent with bathing
      • 69% independent dressing
      • 75% independent toileting
      • 91% independent eaters
    • 35-45% knew how to shop
    • 54% hard time managing daily life
    • 43% public transportation
  • best predictor of outcome - verbal IQ - autism score contributes not as much
    • autism scores in childhood and adolescence seem to be a predictor of outcome
    • combo of CARS and IQ could moderately predict outcome
  • open-ended questions
    • unmet needs?
      • no but there were concerns
      • social interaction
      • programs
      • social skill training
      • buddy system
      • friends
      • 78% - reported social needs
      • 29% work or more hours
      • 15% more education
    • what was helpful
      • family members
      • specific individulas
      • themselves
      • schools and services in general
    • what was unhelpful     
      • school system
      • government beaurocracy
      • lack of supports
      • awkward transitions
      • not as many services
      • attitudes and ignorance
      • specific individual
• Discussion
  • limited independence
  • low economic outcome
  • behavioral concerns
    • narrower range
    • kids with more services
  • half had a fail to good and half had a poor outcome - better than previously reported
    • could the poor outcomes have been close to very poor?
    • higher expectations might have influenced outcome?
    • is care better in group homes than in indstitutions?
  • some regression at puberty (16-17%)
  • Obesity was common - not active
    • double the rate of adults without disabilities
  • academics not good in terms of outcome - could be related to cognitive ability?
  • verbal IQ most closely tied with outcome
    • CARS score also contributed
  • sample might have been biased - those who lived at home might have been more eager to participate
    • younger age of sample - is it intervention or is it the sample that is giving more positive outcomes?
  • telephone interview might have influenced the results
  • did not re-examine the children in adulthood
• in general, it wasn't treatments that were reported as most helpful, it was individuals themselves