MORE ABOUT ADULT OUTCOMES IN AUTISM SPECTRUM DISORDER

Catherine Lord, Ph.DIn collaboration with Andrew Pickles, Ph.D. from Kings

College, London and James McCauley, Ph.D. from UCLA

Conflict of interest and funding■ I receive royalties from Western Psychological

Services for the ADI-R, ADOS and SCQ. Proceeds from projects and clinics in which I am involved are donated to HAVE DREAMS in a wrap-around program in Chicago.

■ I receive funding from NIMH, NICHD, DoD, HRSA, Autism Speaks and the Simons Foundation.

ASD as a Neurobiological Disorder of Learning and ProcessingThat changes with development and affects development in turn with opportunities to intervene and improve

PresenterPresentation NotesBULLKI- 4/3/1992; 3 years old; birthday party

Core Symptom DomainsPLUS Associated Medical Features

Social –Communication

Impairment& Restricted

Interests

isorder

AUTISMSPECTRUMDISORDERS

Language DisordersIntellectual Disabilities

ADHDSocial Anxiety

OCD

Aggression

Epilepsy-EEG abnormalities

Motor problems: Apraxia

Immune Dysfunction

Gastro-intestinal Dysfunction

Sleep Disturbance

Can we diagnose autism in 2 year olds?

■Multiple measures

■Two different cohorts: range of income, rural/urban, education levels; white and African American

■Parent reports and direct observations

■192 consecutive referrals for ASD; 21 DD controls (no evid ASD);about 50 “new” recruits

Watching “separate groups” become less distinguishable■ In our longitudinal study: face to face at 2, 3, 4, 5, 9, 19, 26,

30 (long interview at 14)■ Some kids moved out of the spectrum – out of 192, one at

5, one more at 9, 8 at 19, 5 at 26■ Some moved into the spectrum, 2 at 3, 2 at 9, 2 at 19, 1 at

26■ Many of the outcomes of our “control” participants are not

that different than the ASD participants with similar IQs

Age 2 by age 19 NVIQ Categories

PresenterPresentation NotesEvery child in severe stayed in severe (under 40); every child in moderate (under 55) stayed in moderate or went to severe

AT THE BOTTOM, PUT THE Ns AFTER THE CATEGORIES, SUCH AS AVERAGE (N=XX) TRY TO MAKE THE LABELS BIGGER FOR THE AXES AND THE LEGEND BECAUSE I’M WORRIED PEOPLE WON’T BE ABLE TO READ

Chart2

Average (n=17)Average (n=17)Average (n=17)Average (n=17)Average (n=17)

Borderline (n=26)Borderline (n=26)Borderline (n=26)Borderline (n=26)Borderline (n=26)

Mild (n=20)Mild (n=20)Mild (n=20)Mild (n=20)Mild (n=20)

Moderate (n=16)Moderate (n=16)Moderate (n=16)Moderate (n=16)Moderate (n=16)

Severe/Profound (n=5)Severe/Profound (n=5)Severe/Profound (n=5)Severe/Profound (n=5)Severe/Profound (n=5)

NVIQ Category at age 19

Average

Borderline

Mild

Moderate

Severe/Profound

NVIQ Category at Age 2

Percent

47

24

12

0

18

42

12

15

4

27

10

10

15

15

50

0

0

0

19

82

0

0

0

0

100

Chart1

Average (n=17)Average (n=17)Average (n=17)Average (n=17)Average (n=17)

Borderline (n=26)Borderline (n=26)Borderline (n=26)Borderline (n=26)Borderline (n=26)

Mild (n=20)Mild (n=20)Mild (n=20)Mild (n=20)Mild (n=20)

Moderate (n=16)Moderate (n=16)Moderate (n=16)Moderate (n=16)Moderate (n=16)

Severe/Profound (n=5)Severe/Profound (n=5)Severe/Profound (n=5)Severe/Profound (n=5)Severe/Profound (n=5)

Average

Borderline

Mild

Moderate

Severe/Profound

NVIQ Category at Age 2

Percent

47

24

12

0

18

42

12

15

4

27

10

10

15

15

50

0

0

0

19

82

0

0

0

0

100

Sheet1

Average (n=17)Borderline (n=26)Mild (n=20)Moderate (n=16)Severe/Profound (n=5)

Average47421000

Borderline24121000

Mild12151500

Moderate0415190

Severe/Profound18275082100

Sheet2

Sheet3

Trajectories of Vineland Communication Ages

Quality of peer interactions during childhood (age 9)and early adolescence (age 14) predict autism outcomes

40

45

50

55

60

65

�

Positive Outcomes

Cognitively Able ASD

Less Cognitively AbleASD

PIPP

S D

isco

nnec

tion

Subs

cale

T-s

core

s

F = 6.9, p < 0.003

*

Jones et al., 2017

*

Less

Con

nect

ion

with

Pee

rs Age 19

Variability in achievement levels at age 9 and 18 for low vs. high IQ groups

* Red boxes indicate the proportions of children in the grade level

PresenterPresentation NotesHuge variability in achievement levels at ages 9 and 18, especially for both low and high IQ groups at age 9, and then for lower IQ group at age 18.

ASD-LCA 56.8 Percent ofparticipants with IQ >70, n=46

ASD- MCA 24.3 56.2ASD- VPO 7.2 16.7No- ASD 11.7 27.1

Percent of Each of Four Groups, n=101

Chart1

ASD-LCA

ASD-MCA

ASD- Very Positive Outcome

No Obvious ASD

Adult Outcomes by ASD Diagnosis, Intellectual Disability and Independence

Adult Outcomes by ASD Diagnosis, Intellectual Disability and Independence

[][]

[][]

[][]

[][]

63

27

8

13

Sheet1

Adult Outcomes by ASD Diagnosis, Intellectual Disability and Independence

ASD-LCA63

ASD-MCA27

ASD- Very Positive Outcome8

No Obvious ASD13

Class 1 Best outcomeClass 2 High IQ

AutismClass 3 Low IQ Autismw/o behavioural probClass 4 Low IQ Autismwith behavioural prob

-2-1

01

2Po

orer

out

com

e

CSS 2

5%

VIQ-rev

90%

NVIQ-

rev 89

%

HYP 3

8%

IRRIT 2

5%

CBCL

10%BD

I 17%

PANAS-

P-rev 22

%

PANAS-

N 3%

WBQ-r

ev 23%

Meds 3

1%

work 62

%

Living

51%

friends

66%

Daily_l

iv-rev 7

9%

meas_new

Class1 22% Class2 26%Class3 25% Class4 27%

PresenterPresentation NotesClass 1 half ASD, half non-ASD; Class 2 ? Higher hyper and irrit; high CBCL, very high BDI and PANAS-N, high PANAS-P, poor WBQ, DL ok but few friends, poor work and independenceClass 3 and 4, almost all ASD; class 4 high irrit and hyp from early ages; lower CBCL, lower depression; high PANAS-P; okay PANAS-N, worst WBQ in class 4

IncrementalPrediction of adultOutcome classes:

Class 1 Best outcomeClass 2 High IQ

AutismClass 3 Low IQ Autismw/o behavioural probClass 4 Low IQ Autismwith behavioural prob

0.2

.4.6

.81

Pred

icte

d pr

ob c

lass

1n=

16

0.2

.4.6

.81

Pred

icte

d pr

ob c

lass

2n=

17

0.2

.4.6

.81

Pred

icte

d pr

ob c

lass

3n=

24

0.2

.4.6

.81

Pred

icte

d pr

ob c

lass

4n=

25

reference class prevalence

No Clinical Info Age 2 CSSAge 2 CSS & IQs Age 3 CSS & IQsAge 5 CSS & IQs Age 9 CSS & IQs

---------- reference line for class prevalence

PresenterPresentation NotesMore variability in two classes with lots of behavior problems

Figure S1 4-class adult outcome latent profile omitting adult verbal and non-verbal IQ

-2-1

01

2Po

orer o

utcom

e

CSS 33%VIQ

-revNVI

Q-rev

HYP 69%

IRRIT 6

6%

CBCL 25

%BDI

6%

PANAS-

P-rev 16

%

PANAS-

N 13%

WBQ-re

v 15%

Meds 35

%wor

k 71%

Living 5

3%

friends 6

8%

Daily_l

iv-rev 64

%

meas_new

0.2

.4.6

.81

Pred

icte

d pr

ob c

lass

1n=

11

0.2

.4.6

.81

Pred

icte

d pr

ob c

lass

2n=

34

0.2

.4.6

.81

Pred

icte

d pr

ob c

lass

3n=

20

0.2

.4.6

.81

Pred

icte

d pr

ob c

lass

4n=

17

IQ Reduced adult outcome

No Clinical Info Age 2 CSSAge 2 CSS & IQs Age 3 CSS & IQsAge 5 CSS & IQs Age 9 CSS & IQs

Reference class prevalence ---

Figure S2 Prediction of adult outcome classes for profile omitting adult verbal and non-verbal IQ

Key messages so far■ Subjective and objective measures of adult outcome are not the same

■ We struggle with how to measure subjective outcome

■ ASD outcomes are not that different than those of children referred at 2 or at 10 for possible autism

■ Can’t deny or underestimate the effects of intellectual disability, which are not that apparent at age 2, but become clearer by 3

■ We can’t underestimate the importance of trajectories of language, adaptive and social development

■ We can measure milestones such as peer connectivity, academic progress, decreases in repetitive behavior but we don’t really no directions of causality

■ Remember role of parents and probably nonspecific aspects of the environment

LanguageFirst wordsLate BloomersMinimal Language

ActivityOveractiveNot Overactive

DLSDaily Living SkillsFewer DLS

Peer Connectedness Peer Connectedness

Less Peer Connectedness

Late Bloomers

Minimal Languag

e

Early Language

Peer Connectedness

Good DLS

Overactive

Peer Connectedness

Overactive

Not Overactive Fewer DLS

Good DLS

Not Overactive

Overactive

Fewer DLS

Peer Connectedness

Fewer DLS

Good DLS

Fewer DLS

Patterns of Development

Early StrengthsNonverbal IQMotor Skills

Joint Attention

MilestoneAcquisition of

structural expressive language

Negative Predictor• General delays • Hyperactivity• Sensory Needs• Insistence on sameness

Positive Predictor

Parent involvement in treatment

MilestoneIncreased self reliance

Academic skills

MilestoneAcquisition of social skillMore complex language

Between 2 and 3

Under 3

School age to Adolescence

OpportunitiesTypical peers

Part time work

• Dignity and Independence• Happiness and well being• Community participation

Freedom from other challenges

Adult Outcomes

Milestones

Pervasive Developmental Disorders

Repetitive Behaviors & Restricted Interests

SocialCommunication

Deficits

Autism

Language Disorders

Intellectual Disabilities

Sense of humor

Fine motor skills

Visual-spatial skills

Honesty

Attention to detail

Curiosity

Intelligence

Predictability

Thanks to you

And the families and all the people who worked on this research, Andrew and

Jamie

Catherine Lord

More about adult outcomes in Autism Spectrum DisorderConflict of interest and funding ASD as a Neurobiological Disorder of Learning and ProcessingCore Symptom Domains�PLUS Associated Medical FeaturesCan we diagnose autism in 2 year olds? Watching “separate groups” become less distinguishableAge 2 by age 19 NVIQ CategoriesTrajectories of Vineland Communication AgesQuality of peer interactions during childhood (age 9)and early adolescence (age 14) predict autism outcomesSlide Number 10Variability in achievement levels at age 9 and 18 for low vs. high IQ groups��* Red boxes indicate the proportions of children in the grade levelSlide Number 12Slide Number 13Slide Number 14Slide Number 15Slide Number 16Slide Number 17Slide Number 18Slide Number 19Slide Number 20Slide Number 21Key messages so farSlide Number 23MilestonesPervasive Developmental Disorders �Slide Number 26