Life Course Development of Adolescents and Adults with Autism Spectrum Disorders

Transcription

1 Life Course Development of Adolescents and Adults with Autism Spectrum Disorders Marsha R. Mailick, PhD

2 Autism Spectrum Disorders Impairments in communication Impairments in reciprocal social interaction Restrictive repetitive behaviors and interests w a i s m a n c e n t e r, u n i v e r s i t y o f w i s c o n s i n m a d i s 2o n

3 Images of Autism in the Media Almost exclusively focused on early childhood Children portrayed alone, not with family

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5 Diagnostic Boom 1990: beginning of the surge in diagnosis of autism Children diagnosed in 1990 are now young adults Gurney, Fritz, Ness, Sievers, Newschaffer, & Shapiro (2003). Archives of Pediatric and Adolescent Medicine.

6 NIH Inter-Agency Coordinating Council on Autism (1/19/10) Question 6: What does the future hold, particularly for adults? Need for studies of the scope and impact of the spectrum of autism in adults, including critical life transitions. Need for longitudinal studies that follow carefully characterized cohorts and their families into adulthood to understand the risk and protective factors that account for quality of life outcomes.

7 Past Research on Adult Outcomes

8 8 boys, 3 girls average age 8 in 1943 average age 78 in 2013

9 History of Blaming the Family (Kanner, 1943)

10 Adolescents and Adults with Autism Focus on the family context of autism. Prospective, longitudinal study spanning 14 years in the life of each family, funded by NIH and Autism Speaks ( ). Repeated measures of the mother, father, siblings, and adolescent/adult with ASD. Overall goal: to investigate the course of change in the characteristics of people with autism during adolescence and adulthood, and its impact on the family.

11 Our Research Approach Large sample (n=406) Recruited from the community (MA and WI) Wide age range to 52 years of age at Time 1 (1998) 62% adolescents age % adults age 22-52

12 Specific Aims Change in autism symptoms, behavior problems, health, activities of daily living during adolescence and adulthood. Change associated with life course turning points and adult outcomes. Bi-directional parent-child effects. Biomarkers of the impact of lifelong parenting.

13 Specific Aims Change in autism symptoms, behavior problems, health, activities of daily living during adolescence and adulthood. Change associated with life course turning points and adult outcomes. Bi-directional parent-child effects. Biomarkers of the impact of lifelong parenting.

14 Study Timeline 14 Years Time 6 Daily Diary/Cortisol Time 1 Time 2 Time 3 Time 4 Time 7 Time 8 Time 9 18 Months Time 5 Proband Interview Time 10 Quality of Life Proband Interview

15 Time 1 Sample Characteristics mean age: 22 years (individual with autism) 51 years (mother) 73% male 65% living with parents at Time 1 74% verbal (use of 3+ word phrases) 95% had Autistic Disorder mean household income: $52,600

16 Co-Occurring Conditions Intellectual Disability (ID, < 70 IQ) 70% Seizures 22% Any mental health dx 51% anxiety disorder 29% OCD 25% depression 18% ADHD 16% schizophrenia 1% bipolar disorder 6%

17 Start with Conclusions Adolescence is a time of improved functioning for those with ASD, on average. HS exit is a turning point, when improvement slows. Behavior problems remain highly prevalent in adulthood. ADL skills should be a target of intervention. Very limited independence in employment and residential arrangements.

18 Autism Across the Life Course Autism is a lifelong disorder whose features change with development (Piven et al., 1996). Teresa across the life course.

19 Teresa in Childhood At age 4 or 5: Constant flapping, spinning, constant motion, running out of the house, severe tantrums if anything was moved or touched. She threw things, smeared toothpaste on mirrors. Did not play with toys looked through them. She had some useless speech. Almost no social interaction. She did have some interaction with siblings but left the room when other people came to the house.

20 Teresa in Adulthood At age 46: She went from almost non-verbal to a complete, understandable appropriate range of communication. She most generally lives in the here and now, this world. Before she was rarely in this world. And she s aware of what goes on in the whole world because she reads so many things. She no longer pulls away from people and she doesn t leave the room. She makes you feel that she wants to be there and wants to be friendly. Now she s more at ease. Not like you or I, but she wants to be there.

21 Teresa in Adulthood Moved to an apartment at age 28, lives alone with staff support. Has two supported employment positions (each 10 hrs per week) doing clerical work. Has had one friend since preschool (who also has a DD diagnosis). At age 46, has significant health problems -- diabetes, high cholesterol, high blood pressure, sleep apnea, anxiety disorder, OCD.

22 Arnold Age 60 Mission

23 Arnold Lives with his elderly parents (~ age 80+). Less independent in ADLs now than when younger (needs help with toileting, bathing, dressing, etc). Has anxiety, GI problems, sleep problems, and takes Librium, Temazepam, and Buspirone for anxiety; Valium when he goes to the doctor or dentist; and Ranitidine for ulcers.

24 Arnold (continued) Focused interests (sequentially): playing a few keys on the piano repeatedly, record players, flushing toilet, canned jar lids on a string, doorstop springs, rubber bands (last 10 years). He did not attend school (day care programs sporadically). Has attended the same adult day program for 30 years, 25 hrs per week, transportation provided. Has one friend, at the day program.

25 Arnold (continued) Has become resistant to going to new places, prefers to be alone. When at home, watches Sesame Street and reruns of Lawrence Welk, while holding his rubber bands. Younger brother is expected to take over responsibility after parents are no longer able; on a waiting list for a group home.

26 Trajectories and Outcomes 1. Change over time in symptoms and behavior problems 2. Change after HS exit 3. Change over time in functional abilities 4. Change in health 5. Employment after HS and residential arrangements in adulthood

27 Change in Autism Symptoms 4.5 years Between T1 and T4 Autism symptom change was examined by comparing ADI-R scores at Time 1 with the data collected 4.5 years later (Time 4). ADI-R sub-scales: NVC = Non-verbal Communication VC = Verbal Communication SR = Social Reciprocity RB/SI = Repetitive Behaviors/Specialized Interests Shattuck et al., JADD, 2007

28 4.5 years between T1 and T4 14 Years Time 6 Daily Diary/Cortisol Time 1* 18 Months Time 2 Time 3 Time 4* Time 5 Proband Interview Time 7 Time 8 Time 9 Time 10 Quality of Life Proband Interview

29 Individual Level Change in Autism Symptoms from Time 1 to Time 4 (by +/- 1/2 SD) Improved No change Worsened 60% 50% 40% 30% 20% 10% 0% NVC SR VC RB/SI

30 Interpretation Reduction in autism symptoms does not necessarily imply development of skills. Example: Impairments in Verbal Communication Reduction of symptoms includes less echolalia, less use of inappropriate statements, fewer verbal rituals Does not imply the improvement of communication skills

31 Change in Behavior Problems Maladaptive Total Scale of the Scales of Independent Behavior Revised (SIB-R; Bruininks et al., 1996) Internalized behaviors (e.g., hurtful to self, unusual or repetitive habits, etc.) Externalized behaviors (e.g., hurtful to others, destructive, disruptive) Asocial behaviors (e.g., socially offensive behavior, uncooperative)

32 Individual Level Change in Behavior Problems from Time 1 - Time 4 (by +/- 1/2 SD) Improved No change Worsened 60% 50% 40% 30% 20% 10% 0% Internalized Externalized Asocial Maladaptive Total

33 Summary Stability or reduction in symptoms and behavior problems over a 4 ½ year period in most adolescents and adults with ASD. The trend continues when we extend out to Time 8 (more than 10 years). But this analysis masks stage-related or age-related trajectories.

34 Percent of Adults Repetitive B ehavior How Prevalent are Behavior Problems in Adulthood? (8 Day Diary Study) Withdrawn Uncooperative Socially Offensive Hurtful to Property Hurtful to Others Hurtful to Self Any Behavior Problem

35 Stage-Related Change: High School Exit Sub-sample who were in high school when the study began (n = 242) Timing of HS exit ranged from age 17 to 22 in our sample Compared change in autism symptoms and BPs from before to after HS exit Factors predicting change: intellectual disability (ID), family income, unmet needs Taylor & Seltzer, JADD, 2010

36 Autism Symptoms Autism symptoms improved while youth were in high school (symptoms became less severe) High School Exit Improvement continued but slower after HS exit

37 Behavior Problems Behavior problems improved while youth were in high school (behavior problems became less severe) High School Exit Pattern of change after HS exit varied by income group and ID status

38 Subjective Burden Relationship Closeness High School Exit High School Exit Taylor & Mailick Seltzer, JADD, 2011

39 Stage-Related Change Leaving HS is a significant turning point. Overall pattern of symptom reduction continues but improvement slows after HS exit. Low income adolescents who do not have ID are at greatest risk for worsening BPs. Higher income adolescents with ID continue to improve after HS exit link with services? Parental burden increases after HS exit and the parent-child relationship was affected in those who had high unmet service needs.

40 Age-Related Change in Daily Living Skills We measured by Activities of Daily Living (ADLs) Personal care (bathing, grooming, dressing) Mealtime (eating, preparing foods, setting and clearing the table, washing dishes) Housekeeping (laundry, household tasks) Running errands, money management Smith, Maenner, & Seltzer, JACAP, 2012

41 Waisman ADL Scale (W-ADL) 17 items, scored 0 = does not have the skill, 1 = performs with help, 2 = independent Maximum score = 34 Measured at Times 1, 4, 8 (~ a 10 year period between T1 - T8) ; r with Vineland =.82 Graphed to show age-related change in performance of ADL skills Compared to adults with Down syndrome Maenner et al., Disability and Health, 2012

42 10 years between T1 and T8 14 Years Time 6 Daily Diary/Cortisol Time 1* 18 Months Time 2 Time 3 Time 4* Time 5 Proband Interview Time 7 Time 8* Time 9 Time 10 Quality of Life Proband Interview

43 W ADL Scores for Autism Sample Figure 1. Change in W ADL score o ver time, individual and group trajectories. Quadratic (age^2) mixed model paramaterizations displayed W ADL 15 Intellectual Disability No ID Has ID Age in years

44 W ADL Scores for Down Syndrome Sample

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

46 ADL Skills and Autism Need for caution in interpretation of trends in older age (fewer cases, possible cohort effects). The data suggest the need to focus on acquisition and maintenance of ADL skills for adults with ASD. Why do adults with DS continue to improve in ADL skills? Implications for services for adults with ASD?

47 Age-Related Change in Health Status (excellent, good, fair, poor) Health Rating Age

48 Change in Excellent Health

49 Changes in Psychotropic Medication T1-T7

50 Number of Prescription Medications number of medications Number of Meds Total Psych Non-Psych Age

51 Summary: Age-Related Health Trajectories Need for health surveillance Medication trends (we found that once a psychotropic medication is prescribed, it is 11 times more likely to continue to be prescribed than to be discontinued). Is age 45 a turning point, with increased risk or cohort effects?

52 Employment after HS and Residential Arrangements in Adulthood Post-secondary education and employment after HS exit Residential arrangements in adulthood

53 Vocational Index Taylor & Mailick Seltzer, JADD, 2012

54 Percent of Adults with ASD in Each Vocational Index Category Taylor & Mailick Seltzer, JADD, 2011

55 10-Year Change in Vocational Index Scores Focus on sub-sample who had already exited HS at Time 1 (n = 164) Plotted change in VI scores across 6 time points over 10 years Analyzed factors that predicted change Separate analysis for men and women

56 10 years between T1 and T8 14 Years Time 6 Daily Diary/Cortisol Time 1* 18 Months Time 2 Time 3 Time 4 Time 7 Time 8* Time 5 Proband Interview Time 9 Time 10 Quality of Life Proband Interview

57 Change in Vocational Index Scores Taylor & Mailick, under review

58 Change in Vocational Index Men, on average, are in sheltered work settings, either with some community supported employment or volunteering. Women start out in sheltered settings with community supported employment and decline over 10 years to sheltered work settings -- but less than 10 hrs/week. Loss of stimulating, structured, and social day activity; impact on the family.

59 Summary: Post-High School Day Activities ¼ of adults are in community employment or post-secondary education after leaving HS. ¼ have no work activities (either less than 10 hrs per week or no formal work activities). Women show a pattern of downward mobility; men show a pattern of stability.

60 Effect of Vocational Activities on Behavioral Development Does having stimulating vocational activities (or the lack thereof) lead to change in behavioral development for adults with ASD? Among typical adults, competency in work is one of the strongest predictors of psychological wellbeing (stronger than financial autonomy, romantic/peer relationships) and losing a job is one of the greatest risk factors for personal and familial dysfunction.

61 Effect of Vocational Activities on Behavioral Development Does the level of engagement and independence in vocational activities lead to change in behavior in adults with ASD? autism symptoms behavior problems activities of daily living

62 5.5 years between T4 and T8 14 Years Time 6 Daily Diary/Cortisol Time 1 18 Months Time 2 Time 3 Time 4* Time 5 Proband Interview Time 7 Time 8* Time 9 Time 10 Quality of Life Proband Interview

63 Effects of Vocational Activities Sub-sample who had exited HS before T4 (n=153) Average age = 30 at T4, 69% had ID, 75% were verbal, 46% lived with parents T4 Vocational Independence T8 Vocational Independence T4 Vocational Independence T8 Vocational Independence and T4 Behavior T8 Behavior T4 Behavior T8 Behavior

64 Vocational Independence Predicts Significant Behavioral Change over 5.5 Years T4 Vocational Independence T8 Vocational Independence T4 Vocational Independence T8 Vocational Independence -.12* -.14* T4 Autism Symptoms T8 Autism Symptoms T4 Behavior Problems T8 Behavior Problems T4 Vocational Independence T8 Vocational Independence.12** Taylor, Mailick, & Smith, in preparation T4 Daily Living Skills T8 Daily Living Skills

65 Behavioral Level Does Not Predict Change in Vocational Independence over 5.5 Years T4 Vocational Independence T8 Vocational Independence T4 Vocational Independence T8 Vocational Independence T4 Autism Symptoms ns T8 Autism Symptoms T4 Behavior Problems ns T8 Behavior Problems T4 Vocational Independence T8 Vocational Independence Taylor, Mailick, & Smith, in preparation T4 Daily Living Skills ns T8 Daily Living Skills

66 Effects of Work Environments Direction of effects: from Vocational Index to behavior. The reverse pattern was not significant. The higher the Vocational Index score at Time 4, the lower the level of autism symptoms and behavior problems, and the higher the level of independent daily living skills 5.5 years later. Being in a structured day program has significant benefit for symptoms, behavior, and self-sufficiency. Advocacy for the best possible vocational placement may result in better adult outcomes.

67 Living Arrangements at Time 8

68 Living Arrangements in Adulthood Half of the adults continue to live with family (parents). Few (5%) live completely independently. Reveals the full autism spectrum. Need for long-term support, either partial or full-time staff, or family support.

69 Overall Conclusions: Mixed Picture Stability or reduction in severity of autism symptoms and behavior problems in adulthood, on average. Leaving high school is a turning point, with an elevation of risk for those with average intelligence and from low income families. Adults with ASD may be at risk of declining ADL skills and health in midlife. Only ¼ are in post-secondary education or competitively employed after HS. Only 5% live independently.

70 Overall Conclusions (continued) The transition to adulthood is a time of risk for youth with ASD. More independent vocational activities lead to improved adult outcomes. Goal: obtain as high a level of vocational activity as possible immediately after HS exit.

71 Recommendations for Services Importance of post-secondary education for young adults with ASD (even if not in a degree-granting program). Advocacy for vocational opportunities. Need for autism-specific adult services. Importance of continuing psychological and psychiatric services to reduce behavior problems throughout the life course. Importance of family support.

72 Research Agenda Population-based longitudinal cohort study of early, midlife, and older adults with ASD. Development of protocols for diagnosing and tracking ASD in adulthood. Study of how having ASD takes a toll on health (stress, limited access to health care, long-term polypharmacy). Study of quality of life in midlife. Intervention research what services and supports improve adult outcomes?

73 Acknowledgements Lifespan Family Research Laboratory - Jan S. Greenberg, PhD, Co-PI Leann Smith, PhD Jinkuk Hong, PhD Matthew Meanner, PhD Renee Makuch, Project Manager Julie Lounds Taylor, PhD (now at Vanderbilt University) Anna Esbensen, PhD (now at Cincinnati Children s Hospital) Gael Orsmond, PhD (now at Boston University) Paul Shattuck, PhD (now at Washington University in St. Louis) Dan Bolt, PhD University of Wisconsin-Madison Catherine Lord, PhD Weill Cornell Medical College Funding: NIA (R01 AG08768), NICHD (P30 HD03352), Autism Speaks