Deborah Fein

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Is Recovery Possible in

Autism?
The Help Group Summit,
Oct. 20, 2006
Deborah Fein, Ph.D.
Board of Trustees Distinguished Professor
of Psychology
University of Connecticut

Diagnostic Criteria for Autism

• Impairments in Social Relatedness


– nonverbal communication (e.g. eye contact)
– peer interaction
– joint attention
– emotional reciprocity

Diagnostic Criteria for Autism


(cont’d)
• Impairments in communication and play
– delay in language development
– impaired conversational ability
– stereotyped and repetitive language
– absent or stereotyped pretend play

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Other Social Deficits in Autism
• Social behavior
– Initiations are less play-oriented
– Initiations are more adult-oriented
– Interactions are more need-oriented
– Less visual checking before gesturing
– Reduced social referencing
– Reduced orienting to other’s distress OR
orienting but little prosocial behavior
– Low sensitivity to nonverbal cues

Diagnostic Criteria for Autism


(cont’d)
• Restricted interests and activities
– encompassing preoccupations and interests
– adherence to nonfunctional routines or rituals
– motor stereotypies
– preoccupations with parts of objects

Other Diagnoses on the PDD


Spectrum
• Asperger’s Disorder: meets autism criteria in
social and perseverative domains, no language
delay, adaptive behavior and curiosity intact

• Rett’s Disorder: genetic disorder, girls,


characteristic pattern of regression and hand
movements (wringing, washing, refusal to use),
mental retardation, small head circumference
(MeCP2 gene at Xq28 locus, in some cases)

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Other PDD Diagnoses (cont’d)
• Childhood Disintegrative Disorder: rare,
normal behavior for at least 2 years followed by
serious regression

• Pervasive Developmental Disorder: Not


Otherwise Specfied: meets at least one
criterion in social domain, and some in
communication or perseverative behavior, mild
or incomplete picture of autism

Outcome
• Rutter (1970):
– 1.5% of his group had achieved normal functioning.
– 35% showed fair or good adjustment, usually
required some degree of supervision, experienced
some difficulties with people, had no personal friends,
and showed minor oddities of behavior.
– more than 60% remained severely handicapped and
were living in hospitals for mentally retarded or
psychotic individuals or in other protective settings.
– Initial IQ scores appeared stable over time.

• Other studies (Brown, 1969; DeMyer et al.,


1973; Eisenberg, 1956; Freeman, Ritvo,
Needleman, & Yokota, 1985; Havelkova,
1968) report similar data. Higher scores on
IQ tests, communicative speech by age 5
or 6, are prognostic of better outcome
(Lotter, 1967).

3
Lovaas, 1987
• 9/19 in the experimental group (40 hours a week ABA)
successfully completed normal first grade in a public
school and had an average or above score on IQ tests
(M=107, range=94-120), and gained an average of 30 IQ
points over Control Group subjects (10 hours/week).

• 8/19 passed first grade in aphasia classes and obtained


a mean IQ score within the mildly retarded range of
intellectual functioning (M=70, range=56-95).

• 2/19 were placed in classes for autistic/retarded children


and scored in the profoundly retarded range (IQ<.30).

• Lovaas reported 47% ‘recovered’


• Attempted replication by Tristam Smith reported
good gains in cognition and academics but not
adaptive skills and behavior, and no ‘recovery’ in
ABA group, compared to parent-training group
• Eikeseth compared 1 year of ABA to eclectic
treatment, age 4-7, matched for intensity and
group characteristics. ABA group made more
gains, but no ‘recovery’

Perry, Cohen and DeCarlo (1995) reported


on ‘recovery’ in autistic twins with
regressive autism who rec’d intensive ABA
treatment

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• Szatmari et al, 2003 examined outcome for non-retarded
ASD children age 4-6. Outcome measured at 6-8 and
10-13.
– Measures of socialization, communication, and autistic
symptoms. No discussion of change in dx but some Vineland
Soc and Comm scores in the normal range
– Predictor variables worked better for soc and comm. than autistic
symptoms
– Comm. in Asperger’s in low normal range; other outcome
variables were below normal, and social declined over time.
– Language skills predicted better for autism than Asperger’s.
– Nonverbal skills predicted outcome in autistic symptoms for all
ASD and esp. Asperger’s.

• Fein et al (1999) and Stevens et al (2000)


studied preschool clusters, and
longitudinal clusters of autistic children.
– At preschool, two major clusters marked by
high and low IQ (with 65 dividing line)
– Preschool IQ was the best predictor of both
cognitive and behavioral functioning at
schoolage, better than degree of autistic
symptomatology

Early Diagnostic Changes


• Lord (1995) 88% dx’d autistic at 2 still autistic at 3,
clinical judgment more accurate than ADI
• Gillberg et al (1990) 75% dx under age 3 still autistic
several years later
• Cox et al (1999) autism stable, PDD less so
• Stone et al (1999) ASD vs. not ASD stable, aut vs. PDD
less so
• The few who were nonautistic at followup tended to have
other disorders (MR, DLD)
• Eaves and Ho (2004)1/34 autistic not ASD, 2/9
PDDNOS not ASD, (3/32 total), 6 not aut stayed not
ASD

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Sallows and Graupner (2005):
48% of a group of 23 children receiving ABA
reach ‘best outcome’ status, scoring normally on
tests of IQ, language, adaptive functioning,
school placement, and personality, with mild
elevations on some personality and diagnostic
scales.
Three of them needed classroom aides for
attention problems, and one would probably still
meet criteria for ASD, but the remaining 7 or 8
children would probably meet our criteria for
optimal outcome (OO).

• Howard, Sparkman, Cohen, Green, and


Stanislaw (2005)
• Twenty-nine children received intensive behavior
analytic intervention (IBT; 1:1 adult:child ratio, 25–40 h
per week). Two control groups received intense and non-
intense ‘eclectic’ treatment.
• At follow-up, the IBT group had mean scores in the
average range on cognitive, non-verbal, communication,
and motor skills, whereas the only mean score in the
normal range for the eclectic groups was in motor skills

Prognosis for Children with ASD


Positive signs:
Communicative language by age 5
Good response to early intervention within 3 months
Negative signs:
Seizures
Slow response to good quality intervention
General outcome:
persisting, lifelong disability
50% or more show significant mental retardation (not recent)
50% or more have little useful language (not recent)
even with good cognitive functioning, little vocational or relationship
success in the ‘real world’

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Outcome (summary)
• Many studies show IQ to be relatively stable
• IQ predicts social, communication, and adaptive
behavior
• Social and communication domains can evolve
separately from repetitive behaviors (Charman et
al,2005). Social and communication skills tend to get
better; repetitive behaviors tend to be stable
• Predictability is better from age 3 than age 2 (Charman
et al, 2005)
• “Followup studies indicate that the prognosis for the
majority of individuals with autism remains poor” (Howlin,
2003)
• Few controlled studies (except a few of ABA) report
‘recovery’, but all followup studies have a few children
functioning in the normal range on social measures, or
showing a change in diagnosis to a non-ASD syndrome

What is ‘Recovery’ from a


Developmental Disorder?
Not ‘restoration of previously acquired
function’ (Ewing-Cobbs et al, 2003), but
approaching the normal trajectory of
development

Theoretical Curves

50
40
autistic
30
skill

normal
20
recovered
10
0
1 2 3 4 5 6 7
age

7
110
100
standard score

90
Autistic
80
Normal
70
Recovered
60
50
40
1 2 3 4 5 6 7
age

Is “Recovery” Possible?
General belief in the field is ‘no’
Many experts cited in the press as well as in
journal articles cautioning against hopes of
‘recovery’

Three Studies

• Autism can evolve into ADHD


• Language functions in previously ASD
children
• “Recovery” from age 2 to 4

8
Pervasive Developmental Disorder
Can Evolve into ADHD: Case
Illustrations
Deborah Fein, Ph.D.
Pamela Dixon, M.A.
Jennifer Paul, M.A.
Harriet Levin, OTR/L
Journal of Autism and Developmental
Disorders, in press

• 11 cases of ASD that evolve into ADHD; 9 boys 1 girl


• 3 Autistic Disorder, 8 PDD
• No difference between autism and PDD
• 9/11 showed regressive type
• 8/11 intensive ABA, 3 integrated or spec. ed preschool
• 10/11 had recurrent ear infections, 1 tics, 1 myoclonic sz., 2 on
stimulants, 1 on Clonidine
• 6 ADHD-I, 5 ADHD-C
• Average age of first non-ASD diagnosis: 7
• Some mild residual features of autism:
– social awkwardness (more impulsive/aggressive/immature than aloof),
– mild perseverative interests,
– occasional motor stereotypies.

Case of ST
• Language lost around 15 months
• Met criteria for full autism at age 3
• Responded rapidly to intense ABA program
starting at age 3
• Age 5, starting to develop more social interest,
but still quite solitary; diagnosed PDD
• Age 7.5, quite social, academically and
cognitively normal, notable attention problems
• Age 13, socially normal, academically high
achieving, good motor skills, mild attention
problems

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Interpretations of the autistic to ADHD
clinical picture
• Comorbid ASD/ADHD; autism resolves, leaving
the ADHD clinical picture

• The children are a severe subtype of ADHD that


presents as autism in the early years

• Attention impairment is part of ASD; when


social, behavioral, and communication
impairments subside, attention impairments
remain

Modified Checklist for Autism in


Toddlers (M-CHAT) (Robins, Fein,
Barton & Green, 2001)
Method: 23 item parent report
Age: 16-30 months
Reliability: α=.85
Current estimate of Sensitivity: 85-95%
Current estimate of Specificity: 87%
c. 5000 children screened, follow-up
under way
Available on firstsigns.org website

Update on M-CHAT
• Pediatric vs. high risk screens
– Total sample 80% pediatric, 20% high risk
– 1.6% peds sample failed, 28% high risk
– 0.6% peds sample eval’d, 22% high risk
– 0.2% peds sample PDD/aut, 16% high risk
sample PDD/aut

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Reliability of diagnosis from age 2 to 4
for children detected by the Modified-
Checklist for Autism in Toddlers
(Kleinman, Sutera, Robins, Fein et al,
in prep)
autistic age 2 not autistic
age 2

autistic age 4 46 0

not autistic 15 16
age 4

Can We Predict Who Will do Well?


• Standard scores
• Clinical impressions
• Item analyses
• Head circumference

Vineland Communication

100

90

80
asd to non asd
70 asd to asd
non asd to non asd
60

50

40
Vine.Comm.1 Vine.Comm.2

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Vineland Socialization

100

90

80
asd to non asd
70 asd to asd
non asd to non asd
60

50

40
Vine.Soc.1 Vine.Soc.2

Vineland Motor

95
90
85
80
asd to non asd
75
asd to asd
70
non asd to non asd
65
60
55
50
VINEMOTOR1 VINEMOTOR2

Symptom Severity
40

35

30

25
ASD to ASD
20 Non ASD to Non ASD
ASD to Non ASD
15

10

0
CARS Time 1 CARS Time 2

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DSM-Symptoms

8
7
6
5 ASD-to-NON
4 ASD-to-ASD
3 NON-to-NON
2
1
0
DSM Symptoms DSM Symptoms
Time 1 Time 2

Cognitive Ability

100

90

80

70 ASD to ASD
Non ASD to Non ASD
60 ASD to Non ASD

50

40

30
IQ Time 1 IQ Time 2

Receptive Language

45
40
35 ASD-to-NON
30 ASD-to-ASD
25 NON-to-NON
20
15
Mullen Rec. Mullen Rec.
Lang. Time 1 Lang. Time 2

13
Expressive Language

45
40
35 ASD-to-NON
30 ASD-to-ASD
25 NON-to-NON
20
15
Mullen Exp. Mullen Exp.
Lang. Time 1 Lang. Time 2

Visual Reception (nonverbal


reasoning)
55
50
45
40 ASD-to-NON
35 ASD-to-ASD
30 NON-to-NON
25
20
15
Mullen Vis. Mullen Vis.
Rec. Time 1 Rec. Time 2

Are clinical impressions or Item


analyses useful in predicting who
does well?

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• So far, item analyses reveals no
differences between the children who stay
autistic and those who leave the spectrum,
except:
– the children who leave the spectum are more
interested in listening to stories, and
– are better at some specific motor skills, such
as running, and twisting door knobs and jar
lids.

Mean head circumference z score by diagnosis at


second evaluation
1.5

1
mean HC z score

0.5

lost ASD dx
ASD group
0
birth to 2 weeks 1 to 2 months 3 to 5 months 6 to 9 months 10 to 14 months 15 to 25 months

-0.5

-1

age in months

Mean weight z scores by diagnosis at second


1.2 evaluation
1

0.8

0.6
mean weight z score

0.4

0.2
ASD group
lost ASD dx
0

birth to 2 1 to 2 3 to 5 6 to 9 10 to 14 15 to 25
-0.2 weeks months months months months months

-0.4

-0.6

-0.8

age

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Mean height z scores by diagnosis at second
1.6
evaluation

1.4

1.2

1
mean height z score

0.8

ASD group
0.6
lost ASD dx
0.4

0.2

0
birth to 2 weeks 1 to 2 months 3 to 5 months 6 to 9 months 10 to 14 months 15 to 25 months

-0.2

-0.4

age in months

What are the possible reasons for


leaving the ASD spectrum?

• Incorrect diagnosis at age 2


• Form of autism that can be alleviated
with maturation
• Successful treatment

Residual Language Deficits in Optimal Outcome


Children with a History of Autism
Elizabeth Kelley, Jennifer J. Paul, Deborah Fein, &
Letitia R. Naigles
University of Connecticut

Journal of Autism and Developmental


Disorders, 2006

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14 children with prior ASD diagnoses, age 5-
9, IQs in the normal range
placed in age-appropriate mainstream
classes
considered to be generally functioning at the
level of their typically developing peers
administered an extensive battery of
standardized and experimental language
tests

Results
• Normal performance:
– Comprehension of vocabulary, grammatical
morphemes, and sentences
– Expressive vocabulary and morphology
– Memory for sentences
– Adaptive skills (communication, socialization)

Results (cont’d)
• Impairment in:
– Mental state verbs (know, guess, estimate)
– Reasoning about animate objects
– Second order theory of mind
– Producing narratives (made fewer causal
attributions, discussed fewer major events,
were less likely to discuss characters’
motivations, and were more likely to
misunderstand the pictures)

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• Followup of these children at age 9-12
indicates that they are closing the gap.
The only remaining deficit (p>.06) is in
mental state verbs

Follow-up of Optimal Outcome Children


Opt.Out. HFA Typical

NEPSY Tower 11.73 8.43 13.36


PPVT 114.86 99.30 122.62
Mental State Vb % 84.29 82.67 93.74*
Pragmatic Lang 97.71 86.67 110.00
NEPSY Face Memory 10.45 8.17 10.21
Vineland Comm. 101.29 85.63 104.08
Vineland Soc. 95.07 70.00 106.83
Vineland Daily Living 90.21 74.75 97.67
WISC-IV Matrix 10.69 10.27 11.21
WISC-IV Verbal 110.79 92.22 120.79
CELF-3 Rec.Lang. 112.62 96.50 122.29
CELF-3.Exp.Lang. 102.00 91.56 118.07
TLC Interp. Intents 103.67 80.38 109.25

Can Autistic Children Recover?


• Most autistic children do not ‘recover’ (no longer show
clinical picture of autism), but some do
• We don’t yet know the percent that are capable of
‘recovery’, nor what genetic, physiological, or
developmental factors predict capacity for good outcome
• Of those who ‘recover’, most show residual deficits in
language, attention, social skills, or obsessionality
• Recovery is associated with intense, early intervention,
but no systematic studies show how much or which type
works best, or whether intervention is always necessary

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How Can Recovery Work: Two Key
Questions
• Are the children for whom ‘recovery’ is
possible the ones with minimal structural
abnormalities?
• When ‘recovered’ children do a task
normally, are they using the same brain
systems as children who were never
autistic?

Syntax processing task (adapted


from Just et al, 2004)
The mother thanked the cook.
Who was thanked?

The mother The cook

Activation on a Syntax Task


ASD ASD to Non-ASD Typical Ctls

Composite maps for language tasks vs. baseline fixation/rest


(threshold at t=5.2, p=2.3x10-7).
Cross hairs are centered at -55, -33, 6 (Wernicke’s Area).

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Who are the children who make
limited progress despite good
intervention?

• mentally retarded
• dense language disorder
• intense need for repetitive behaviors

How Can Recovery Work?


• Bypass abnormal motivation system (as opposed to FloorTime approach)

• Teach pivotal skill that is missing (Koegel), such as face processing

• Intense early intervention provides an ‘enriched environment’ that promotes


synaptogenesis.

• Forced teaching of language and other skills forces more normal patterning of cortex

• Neurologically based deficit in social orienting is prevented from disrupting further


neurological development (Mundy & Crosson)

• Pairing social contact with primary reinforcers results in social contact developing
secondary reinforcing value (Dawson)

• Suppression of interfering behaviors, especially stimulatory and repetitive behaviors

• Teach alternative routes to the same skills

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