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Autistic Children as Adults: Psychiatric, Social, and Behavioral Outcomes
Autistic Children as Adults: Psychiatric, Social, and Behavioral Outcomes JUDITH M. RUMSEY, PH.D, JUDITH L. RAPOPORT, M.D., AND WALTER R. SCEERY, M.S.W., J.D. The psychiatric, social, and behavioral outcomes of 14 men (X age = 28 years, S.D. = 6.8), with well-documented histories of infantile autism, 9 of whom were unusually high functioning, were studied in the longest term, systematic follow-up on autism to date. Residual social impairments and varied residual psychiatric and behavioral symptoms were seen in all subjects and are described. Especially frequent were stereotyped movements and concrete thinking. No subject showed positive schizophrenic symptoms or qualified for any DSM-III adult diagnosis other than autism or autism, residual state. Journal of the American Academy of Child Psychiatry. 24, 4:46!)-473, 198!)
Autism is a relatively new syndrome, having first been identified by Professor Leo Kanner of -Iohns Hopkins School of Medicine in 1943. Initially viewed as continuous with adult schizophrenia, the term "childhood schizophrenia" was also applied to this syndrome. Kanner's (l94;~) position that autism was unique and distinct from schizophrenia stimulated controversy concerning the continuity of these disorders (Bender and Faretra, 197:~; Fish, 1977). Follow-up studies of autistic children (DeMyer et al., 1973; Eisenberg, 1956, 1957; Eisenberg and Kanner, 1956; Kanner et al., 1972; Lotter, 1974; Rutter, 1970; Rutter and Lockyer, 1967) have shown that the natural course of autism is gradual symptomatic improvement with persistent, residual social impairments. Despite great variability in intellectual and linguistic functioning across patients, there is continuity within individuals, and IQ and the presence of communicative speech by age 5 years are good prognostic indicators. These studies have also shown that autistic children do not develop hallucinations and delusions, but frequently develop seizures, findings which support Kanner's view of discontinuity. However, the mean age at follow-up in these more systematic studies is 15 years, which falls short of the age of greatest risk for major adult psychiatric disorders. In addition, comparative studies of children with early onsets (under 2 years) versus late onsets (above 11 years) of illness (Kolvin 1971; Kolvin et al., 1971) have found differences in clinical symptoms, thus
providing additional validation of discontinuity. Kolvin (1971) and Kolvin et al. (1971) found that only those psychotic children with late onsets showed delusions, hallucinations, and thought disorder, as seen in schizophrenia, while early onset cases showed gaze avoidance, abnormal preoccupations, self-isolating behavior, echolalia, and hyperactivity more often than did late onset cases. Influenced by these studies, the DSM-III reflects the notion of discontinuity held by the majority of workers in this field. Infantile autism is classified as a pervasive developmental disorder, and early onset and absence of hallucinations, delusions, and incoherence are required for its diagnosis. A DSM-III diagnosis of schizophrenia or other psychosis in children requires that the patient meet criteria for the diagnosis of those disorders in adults; no unique set of criteria is used for diagnosing schizophrenia or other psychoses in childhood. The present study examined psychiatric and behavioral outcomes in 14 men with clearly documented early childhood diagnoses of autism compatible with DSM-III criteria. Nine subjects were unusually high functioning, a factor which facilitated satisfactory examinations of mental status. This paper reports on the long-term continuity in symptoms and disability, of particular interest because of the advanced age of this sample as compared with other systematically studied groups. Given the high levels of functioning in our sample, we also attempted to glean retrospective, subjective accounts of the disorder, including reports about delusions and the quality of relationships with parents.
Received May 21, 1984; accepted July 9, 1984. Please address correspondence to: Judith M. Rumsey, Ph.D., Section on Child Psychiatry, National Institute of Mental Health, Building 10, Room 6N-240, 9000 Rockville Pike, Bethesda, MD 20205. The authors thank the National Society for Autistic Adults and Children and the Linwood Center in Ellicott City, Maryland, for their invaluable assistance in announcing our study to families and the families who participated in this research.
Method Subjects Autistic men were sought nationwide through organizations and school programs which serve children and adults with autism for participation in a PET
0002-71:l8/8,'j/2404-046.') $02.00/0
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RUMSEY ET AL.
scan study which required subjects to be at least 18 years of age and in good physical health (Rumsey et al., 1985). Only patients with clearly documented histories of autism compatible with DSM-III were considered as potential participants. Exclusionary criteria were: (1) known infectious, metabolic, or neurological disease; (2) seizures; (3) inability to discontinue any medications; (4) inability to cooperate with medical tests; (5) history of highly invasive medical procedures to the head (e.g., neurosurgery); and (6) hard neurological findings (e.g., frank hydrocephalus), focal signs, and any gross neurological dificits other than mental retardation. (See one exception below.) "Soft" neurological signs and isolated abnormalities of tone, reflexes, or movement, characteristic of developmental disorders, were expected and did not constitute a basis for exclusion. Evaluations included a medical history, general physical and neurological examinations, including routine blood and urine chemistry determinations, EEG, and CT scan. Fourteen men, 18-39 years of age (X = 28, S.D. = 6.8), were admitted to the study. All were evaluated by a psychiatrist not associated with the study to determine their ability to give informed consent. Dependent upon the outcome, patients and/or parents discussed research procedures with an investigator and signed a consent form which described the purposes of the study and testing procedures. Thirteen were seen as inpatients, and one as an outpatient, over 5 days. Seven had been diagnosed as autistic by Professor Leo Kanner, one by a student of his, and five by other physicians. One subject had suffered a sudden loss of sight in one eye as a teenager, which was attributed to thrombosis of the retinal artery, but was otherwise healthy and free of other major neurological findings. His unusually good outcome and the clear independence of the partial sensory impairment from his autism led us to include him in the clinical follow-up. This sample was heterogeneous despite the application of these specific selection criteria. Therefore, they are subgrouped as follows for descriptive purposes: Nine patients with verbal and performance IQs above 80 and good language skills constitute our "high functioning subgroup." Our "lower functioning subgroup" consists of two patients with some mental retardation and three with specific language deficits (mutism or limited speech) with approximately average or higher performance IQs. (Specific test scores follow.) Structured Psychiatric Interviews Patients were interviewed by a child psychiatrist using the NIMH Diagnostic Interview Schedule (DIS) (Robins et al., 1981) and portions of the Diagnostic
Interview for Children and Adolescents (DICA) (Herjanie and Campbell, 1977). In addition, subjects with good language were questioned about early memories and specifically about "why" they engaged in rituals, resisted change, and the like and about the quality of their relationship with each parent. Together these interviews provided comprehensive information on lifetime and current symptoms. Current DSM-III diagnoses were made on the basis of these interviews, behavioral observations, and the patient's history. Parent Interviews Mothers of 13, fathers of 7, and an advocate-trainer of 1 subject were interviewed regarding the patient's history and current status, thus providing validating and supplemental information. In addition, parents were interviewed for information about themselves and other family members with a modified version of the Schedule for Affective Disorders and Schizophrenia (SADS)-Form L (Mazure and Gershon, 1979). Parental social class was rated on the basis of occupation and education of the head of household with a modification of the Hollingshead index (Watt, 1976). The Vineland Social Maturity Scale (1965) was completed by a psychologist using parents and the advocate-trainer as informants. This widely used clinical measure of social-adaptive functioning includes items that tap communication, socialization, locomotion (e.g., independent travel), occupational pursuits and achievements, self-direction, and self-help skills from infancy to adulthood. It yields a global social age score, which is divided by the patient's chronological age up to a ceiling of 25 years and multiplied by 100 to yield a social quotient (SQ). An average score is 100 ± 5, and standard deviations range from 6 to 12 within the age range studied here (Doll, 1953). The SQ is less sophisticated psychometrically and not precisely comparable to Wechsler IQ scores. However, some general comparisons of the two are possible. Additional Measures The 5-day period of admission and extensive study allowed staff to observe behaviors within the social context of the ward and various laboratories that were not necessarily observed in the psychiatric interview situation. A written record of unusual behaviors seen throughout the week was made for each patient, usually adding information on motor symptoms and abnormal social behaviors. Patients were also tested with the Wechsler Adult Intelligence Scale (WAIS) and Wide Range Achievement Test (WRAT). Symptom Patterns and Behavioral Characteristics Table 1 lists the number of patients showing various symptoms identified in psychiatric interviews and/or
TABLE 1 Psychiatric and Behavioral Characteristics of Autistic Men, as Assessed by Psychiatric Interoieuis" and Behavioral Observations Made Over 5-Day Hospitalizations No. and Type of Subjects Showing Symptom
Characteristic
Social relating: Lacks friends Aloof Marked social improprieties' Oppositional Affect and anxiety: Flat affect Generalized anxiety Depression Silly, immature, teasing Separation anxiety Phobic Mania Thought processes: Concrete Perseverative Impoverished (content of speech) Circumstantial or irrelevant Obsessional thinking Racing thoughts, pressured speech Positive schizophrenic symptoms: Hallucinations Delusions Incoherence Motor symptoms: Stereotyped repetitive movements: Arm, hand, or finger movements Pacing Rocking Vocal tics Compulsions Hyperactivity Speech and language: Peculiar uses of speech and language: Talks to self Uses words or phrases with special meanings Perseveration, repetitive questions or phrases Poverty of speech (little spontaneous speech) Monotone, lack of normal vocal inflections Word or phrase repetition" Highly stereotyped Occasional stuttering Sensory/perceptual: Smells objects Hypersensitive to light Hypersensitive to sound Other: Attentional deficits Somatization
High functioning subgroup
Lower functioning subgroup
Total Sample
WAIS VIQ and PIQ 82-126b
Language-impaired WAIS PIQ 88-129b
Mentally retarded WAIS VIQ and PIQ 48-77 b
(N=9)
(N=3)
(N=2)
(N= 14)
N(%)
N(%)
N(%)
N(%)
8 4 3 3
3 (00) 1 (33) 0(0) 0(0)
2 (00) 1 (50) 1 (50) 0(0)
13 6 4 3
5 (56) 6 (67) 2 (22) 2 (22) 1 (11) 0(0) 0(0)
1 (33) 0(0) 0(0) 0(0) 0(0) 1 (33) 0(0)
1 (50) 1 (50) 0(0) 0(0) 1 (50) 0(0) 0(0)
7 4 3 3 4 1
1 (33) 0(0) 0(0) 0(0) 0(0) 0(0)
2 (00) 1 (50) 2 (00) 1 (50) 0(0) 0(0)
0(0) 0(0) 0(0)
0(0) 0(0) 0(0)
0(0) 0(0) 0(0)
7 6 1 2 1 3 1
(78) (67) (11) (22) (11) (33) (11)
3 (100) 3 (100) 2 (67) 1 (33) 2 (67) 0(0) 0(0)
2 (100) 2 (100) 1 (50) 0(0) 1 (50) 0(0) 1 (50)
5 4 2 4 3 4 4 1 1
(56) (44) (22) (44) (33) (44) (44) (11) (11)
1 (33) 0(0) 0(0) 1 (33) 1 (33) 1 (33) 0(0) 0(0) 0(0)
1 (50) 1 (50) 1 (50) 2 (100) 2 (100) 1 (50) 0(0) 2 (100) 0(0)
7 (50) 5 (36) 3 (21) 7 (50) 6 (43) 6 (43) 4 (29) 3 (21) 1 (7)
1 (11) 1 (11) 0(0)
0(0) 0(0) 0(0)
0(0) 0(0) 0(0)
1 (7) 1 (7) 0(0)
2 (22) 1 (11)
0(0) 0(0)
1 (50) 0(0)
3 (21) 1 (7)
(89) (44) (33) (33)
(78) (44) (33) (33) (44) (1)
(93) (43) (29) (21)
7 (50) 7 (50) 2 (4) 2 (14) 2 (14) 1 (7) 0(0) 10(71) 5 (36) 5 (36) 4 (29) 4 (29) 1 (7)
0(0) 0(0) 0(0) 12 11 4 3 4 3 2
(86) (79) (29) (21) (29) (21) (14)
• Psychiatric interviews were the NIMH Diagnostic Interview Schedule (DIS) and the Washington University School of Medicine's Diagnostic Interview for Children and Adolescents (OICA). b WAIS VIQ and PIQ are Verbal and Performance IQs, respectively. , Marked social improprieties refer to behaviors such as inappropriate nudity or undress on the ward and socially inappropriate comments. d This refers to repetitions of a word or several words, which resemble stuttering in that the subject appears motorically "stuck" and unable to move on to the next word. This contrasts with language perseveration, which involves the use of stereotyped utterances without such motor difficulty, and which may reflect ideational perseveration.
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RUMSEY ET AL.
direct observations. Parental reports sometimes suggested that symptoms were present which were not observed by us. This supplemental information is included in the following descriptions, but excluded from Table 1 because it represents a less systematic data base. Social Relatedness and Interactions. As seen in Table 1, all patients continued to exhibit social impairments. All would certainly be viewed as peculiar by the layman, a factor which affected their ability to function independently. Parents generally decribed their sons as loners, and only one patient reported any current friendships. This individual, who was gregarious and underinhibited, related primarily to church groups. Others had found social outlets through school clubs and social activities organized by community mental health centers or religious groups, but had difficulty maintaining relationships when the organizations' structure was absent. None were married or had contemplated marriage. Several patients resembled young children in their general demeanor. Some high functioning men exhibited highly stereotyped and/or inappropriate social behaviors. Examples include repetitions of a fixed script when meeting people and inappropriate touching of others' clothing. While some desired friendships, but lacked social competencies, others lacked social motivation either currently or historically. High functioning subjects' memories concerning childhood interactions with parents were concrete and unelaborated. They universally reported feeling that their parents were "on their side" and trustworthy and attributed their unaffectionate childhood behavior to "lack of interest," denying conflict and anxiety. Several, however, voiced feelings of resentment and jealousy toward siblings. Some previously "disinterested" individuals expressed current social motivation, while others remained aloof. Marked social improprieties, such as inappropriate nudity or partial undress on the ward and inappropriate comments, were also noted, even in some high functioning patients. Such behaviors appeared to stem from poor social awareness and immaturity in all cases, rather than sexual interest. Affect and Anxiety. Although none met DSM-III criteria for affective disorder, several showed various affective symptoms. Half the sample showed affective flattening, manifested in monotonous intonation, restricted facial expression, and other nonverbal behavioral deficits (e.g., little body movement). Chronic, generalized anxiety was seen in half of the group. In addition, caretakers of six patients, five of whom were high functioning, reported infrequent temper outbursts, stimulated by frustration and an inability to cope with environmental demands. These incidents
involved aggression against others, destruction of property, and, in some cases, stereotyped movements such as arm flapping. In all cases, they appeared "out of character." Precipitating events included absentmindedness on the part of the patient (e.g., forgetting an airline ticket or one's driver's license), pressure induced by having to make independent decisions, and, in one case, trivial frustrations or environmental changes, such as a lack of soap in a bathroom. Thought Processes. A majority of patients (approximately %) were concrete in their thinking. Other more variable features included perseverative, impoverished, circumstantial, and obsessional thinking. None were incoherent, and even those with limited speech were comprehensible. While no patient showed formal thought disorder (e.g., loose associations, blocking), some parents reported immature beliefs and naivete (e.g., beliefs in fictional characters like Santa Claus until late adolescence). Positive Schizophrenic Symptoms. Hallucinations, delusions, and incoherence, which constitute positive symptoms of schizophrenia, were absent at follow-up. However, two high functioning patients reported childhood memories which raised some question about the former presence of delusions. One stated that, at approximately age 7, he believed that poison gas came out of the wall plugs. This resulted in a drive to cover up all electrical outlets. Another recalled that, at age 14, he thought his clothing was too small and believed that others knew of this thought. While neither of these two retrospective reports presents certain evidence of delusions, they do raise questions about the complete absence of delusions in autism. Motor Symptoms. Stereotyped, repetitive movements were highly prevalent and were directly observed in 12 patients (86%), including 7 high functioning patients. High functioning patients seemed to intentionally suppress these movements in social situations, and some appeared embarrassed when seen engaging in such movements. When parental reports are included, all patients continued to show some stereotyped movements. In some instances, such movements were reported by parents to occur in response to stress or emotional upset. The movements, both observed and reported, most frequently involved the hands or arms. Individual finger movements, rotating movements of the hand, arm flapping, and shaking of the hands or arms were characteristic. Hand-biting was reported by several parents and rhythmic movements of whole bodyrocking and pacing-were also seen. In addition to these more bizarre movements, several patients repetitively tapped papers and table surfaces and interrupted their writing to repetitively tap pencils and
AUTISTIC CHILDREN AS ADULTS
pens against their fingers. Individuals generally had a repertoire of one or two particular movements, but these varied among individuals. Other motor symptoms included vocal tics (grunts, squeaks, hissing sounds), seen primarily in lower functioning patients, compulsions, and hyperactivity. Compulsions included putting objects in their proper places, handwashing, and stereotyped touching of clothing and other objects. Peculiar gaits and limb postures (e.g., flexed arm posture) were also noted. Speech and Language. Language status ranged from normal to complete mutism. Impairments included very limited, dysphasic speech, as well as highly deviant speech. A single mildly retarded patient showed fluent and grammatical, but repetitive and nonsenical speech ("language deviance," rather than deficit). He repetitively asked hospital staff questions about his childhood acquaintances. The most common abnormalities, particularly in the high functioning subgroup, involved speech and its social use. Speech was often monotonous, lacking normal intonational contours. Several patients repeated words or phrases within a sentence, appearing motorically "stuck" and unable to move on to the next word, giving their speech a stammering quality. Several patients mumbled to themselves when with others or talked to themselves when alone. Some held idiosyncratic meanings for conventional words and phrases, seemingly for self-amusement or -stimulation. Poverty of speech and stereotyped speech were also seen with some frequency. Sensory-Perceptual. Although there was little evidence of sensory-perceptual disturbance, this category was coded because of theories which emphasize such features (Ornitz, 1974, 1983). A single patient showed an unusual tendency to smell objects, while another showed some sniffing movements when exploring a room. One patient also kept his room dim and complained about sunlight when his draperies were open. No behavior suggesting hyperacusis was observed. Some parents reported that their sons still cover their ears with their hands and show other stereotyped behavior in reaction to stress, rather than auditory stimulation. One patient insisted on keeping his room very warm and generally wore excessive clothing to keep warm. Other. Varying "attentional deficits" were coded in three patients. These included unusual slowness in responding, as well as difficulties in attending to the examiner which may have stemmed from anxiety. Two individuals showed some unusual staring and inappropriate smiling. Although several parents reported their sons had unusually good memories, particularly for factual information like calender dates, there were
469
also reports of absentmindedness, or failure to adaptively draw upon stored memories to meet practical needs.
DSM-III Diagnoses While all patients displayed residual symptoms, these varied considerably. The three patients who displayed specific language deficits as well as the one with highly deviant (repetitive) speech met DSM-III criteria for Infantile autism, full syndrome present (299.00). The remaining 10 patients, 9 of whom were high functioning, met DSM-III criteria for Autism, residual state (299.01). The presence of good language was the major disqualifying factor for a current diagnosis of "autism, full syndrome." All had shown severe language impairments in early childhood, which included delayed onsets of speech and immediate and delayed echolalia, and, in fact, three showed little or no communicative speech until after 5 years of age, according to parental reports. Their current linguistic abilities were good although abnormalities of speech (e.g., dysprosodies) were apparent. Varying degrees of social deficits and other phenomena that might be regarded as "bizarre responses to the environment" (e.g., stereotyped behavioral patterns) remained. Because most current symptoms appeared to be residuals of early autism, no additional DSM-III diagnoses were warranted. However, in the absence of such a history, one might have considered the diagnoses of Generalized anxiety disorder (300.02), Schizoid personality (301.20), and Simple phobia (300.29) for some of these individuals. Obsessional preoccupations and compulsive phenomena were also present but lacked an ego-dystonic quality and thus would not support the diagnosis of Obsessive-compulsive disorder (300.30). A diagnosis of Compulsive personality disorder (301.40), on the other hand, would not have encompassed additional symptoms displayed by these patients. None of these patients showed current evidence of delusions, hallucinations, or incoherence, the features which differentiate between DSM-III diagnoses of Pervasive developmental disorder, residual state (299.01, 299.91) and Schizophrenia (295.x). Adaptive Functioning Table 2 lists each subject's Vineland SQ, level of educational attainment, employment status, and living situation, as well as age and verbal and performance IQs. As shown here, two high functioning patients completed a year or more of junior college, while most others completed high school with or without receiving diplomas. All of the lower functioning patients received special education into late adolescence or early adulthood. Basic reading, spelling, and math
470
RUMSEY ET AL. TABLE 2 Social-Adaptive Functioning of Autistic Men
10
WAIS IQs
Age
Vineland Social Quotient
(yr)
Verbal
39
108
108
68
2
36
110
113
80
3
31
106
111
88
4 5
30 27
99 103
102 81
72 80
6
22
117
115
64
7
21
97
97
57
8
20
82
86
80
9
18
109
126
56
10
37
Severe deficit
11
32
No speech
12
22
62
129 (3 subtests) 88 (4 subtests) 93
13
32
77
55
56
14
25
48
60
30
Performance
Education Regular high school diploma High school equivalency
Employment
Residence
Sheltered workshop
With parents
Janitor
Supervised apartment" With parents
Regular high school diploma Eighth grade One year junior college
Cab driver
Associate degree, junior college High school, with parttime special education High school equivalency
Key punch operator
Unemployed Library aid
Apartment Supervised apartment" With parents With parents
32
Special education through high school Special education
Special job trainprogram Part-time vocational training Part-time special college student Sheltered workshop
32
Special education
Sheltered workshop
State hospital
45
Special education through high school Special education through high school Special education
Unemployed
With parents
Attends day program at state hospital Special job program
With parent
With parents With parents With parents
Group home
" Supervision is minimal and consists of weekly visits by a counselor, who troubleshoots and helps patient plan.
skills, as assessed by the Wide Range Achievement Test (WRAT), were generally consonant with education and IQ scores. Therefore, as measured by the most basic of academic skills, these individuals received considerable benefits from their educations. According to parents, two high functioning subjects also had done well in foreign language courses. This was notable in light of their early language impairments. Several showed relative strengths in math. However, social-adaptive functioning, as reflected in employment status, living arrangements, and Vineland SQs, fell below expectations based on IQs. As shown in Table 2, even those few individuals who lived apart from parents received some professional or parental support and supervision. Lower functioning patients, of course, were more dependent on others. Only four of the nine high functioning patients were competitively employed (see Table 2); and these, in routine jobs with limited decision making and minimal social interaction. One exception to this was the position of cab driver, which requires more social interaction and independence than did the other jobs held. One high functioning patient was fired from a job because of his compulsive touching of other people and other inappropriate, intrusive social behavior. Another high functioning patient worked in a shel-
tered workshop for retardates because of limitations imposed by his rigidity, obsessional preoccupations, and anxiety about schedules. The three youngest high functioning patients, ages 18-21, were all receiving some additional education or job-training and might be capable of holding competitive jobs in the future. One patient's compulsive habits (e.g., handwashing), obsessional questioning, oppositional personality, and rigidity constituted interfering factors for job success at the time he was seen. Another generally worked slowly and had some timeconsuming compulsions (e.g., hand and arm washing) that could limit his job opportunities. A third demonstrated a talent for math and computer programming, but displayed poor initiative, a factor which might be compensated for by considerable supervision. In addition to patient-related factors (e.g., competencies, maladaptive behaviors), "parent factors" were influential in determining employment outcome. Only two high functioning patients obtained their current jobs on their own, and one of these had received help obtaining his first jobs. Parents and agencies, but particularly parents, played a major role in finding employers willing to give their sons a chance. The Vineland SQs were generally low, relative to IQs, sometimes strikingly so. Low SQs seen in high
AUTISTIC CHILDREN AS ADULTS
functioning patients primarily reflected deficits in areas of self-direction, socialization, and occupational achievements. This is illustrated in the sample Vineland profile shown in Figure 1. As shown here, the emphasis of this scale shifts from self-help items to self-direction, socialization, and occupational skills with increasing age. The failures of this group occur on higher level items and reflect poor initiative, restrictions in social relationships, stereotyped behavioral patterns, and, in some instances, restricted independent travel. Even those patients who function well on their jobs may follow inflexible routines with respect to dress (e.g., wearing an established set of clothing each day of the week) and may be restricted to routine routes in traveling to and from work. Most of these individuals require help with nonroutine matters, e.g., financial planning, dealing with the phone company. Though basic self-help skills are present, some need reminders and feedback from parents about grooming and dress. While these limitations are prevalent, an exception is again seen in one individual who obtained several jobs on his own, files his own taxes, purchased his own automobile, directs his own financial affairs, and vacations VINELAND SOCIAL MATURITY SCALE CA TEGORY PROFILE
25 ------------------------20 --------------------18
-----------------
- 25 20 18
15 12
15
12 ~ 11
VI
11
w
>- 10 ~ 9
10
~
8
9
w
;t.
g VI
8 7 6
7 6
5
5 4
4
3
3 2
2
1 -
o
-- 1 -+----J"i"---"'''''t'---t--.....,..-....oVfI-~L......L.O SELF-HELP SELF-HELP SELF LOCOMOTION GENERAL EATING DIRECTION I & travail SELF-HELP COMMUNSOCIALOCCUPATION DRESSING ICATION IZA TlON
PATIENT'1Q CHRONOLOGICAL AGE ?1 WAIS VERBAL IQ ill WAIS PERFORMANCE IQ ill SOCIAL AGE ~ SOCIAL QUOTIENT
~
FIG. 1. Item composition of Vineland Social Maturity Scale and sample profile of a high functioning adult male with autism, residual state. Shaded boxes reflect positive item scores, or competencies, while blank boxes reflect failed items.
471
alone out of state, showing good self-direction and isolated deficits in social relating. Lower functioning patients showed more pervasive deficits involving self-direction, socialization, communication, occupational achievements, and independence of travel (locomotion). Of the five lower functioning patients, two were unemployed, while three worked in highly supervised settings. Those with high nonverbal IQs were able to use their visuospatial skills to do work such as disassembling and sorting machine parts.
Parental Status and Experiences No history of major psychiatric illness was identified in parents or first degree relatives, although parents did suffer emotional distress because of difficulties inherent in the raising of handicapped children. Parental social class was as follows: 6 upper-upper, 2 lower-upper, 3 upper-middle, and 2 lower-middle. This bias toward higher socioeconomic status was likely a function of biased sampling procedures. Without exception, parents reported early experiences of going from clinic to clinic in an attempt to get a diagnosis they could accept. The usual diagnosis was mental retardation, which did not "fit" with parents' impressions. When these patients were young, autism was still unfamiliar to many people in the mental health field. When autism was diagnosed, parents came away feeling that they were being held responsible and accused of poor parenting. Once able to work through their feelings, these parents made intensive, persistent efforts to obtain help for their children. Support of national organizations such as those established for many chronic diseases was unavailable. Thus, these parents found themselves part of a small group laboring to establish resources for their autistic children. One common feature of the families was a relative lack of long-term planning for the patients, a possibility attributable to several factors. Several parents expressed longstanding denials of the irreversible nature of the disorder. Demands of everyday living also seemed to infringe on long-term planning. And finally, most parents were unsure of how to proceed. Some set up of trusts to provide for financial and day-to-day support they knew would eventually be needed. Others made plans for other family members to accept this responsibility in the future. Casework with this group involved facilitating these plans and involving social agencies that work with handicapped adults. In summary, the parents of these subjects were highly committed to helping their children achieve their maximum potential. We found them to be warm, dedicated, and unrelenting in their efforts.
RUMSEY ET AL.
472
Discussion Each of the patients studied had retained autistic symptoms. While certain "negative," or deficit, symptoms of schizophrenia-most notably flat affect and concrete thinking-were prevalent, no patient showed positive symptoms of schizophrenia. In addition, individual symptoms (but not full syndromes) of anxiety, schizoid, and obsessive-compulsive disorders were seen. Thus, no specific links to schizophrenia were suggested. In contrast to this, two recent follow-up reports on "psychotic" children have suggested possible associations between autism and later-developing schizophrenia. Howells and Guirguis (1984) followed up 10 childhood psychotics with onsets before 30 months and 10 with onsets between 30 months and 11 years. The entire group showed residual symptoms and "schizophrenic states" characterized by negative symptoms (Kraepelin's simple schizophrenia, DSM-III schizophrenia residual state, and Crow's type III schizophrenia). None showed any of Schneider's "first-rank" symptoms-hallucinations and delusions, although they were "suspected" in 10 patients, 2 of whom were from the early onset group. The findings of residuals and negative symptoms in 10 early onset "psychotics" are consistent with our findings, whereas the suspicion of positive symptoms is not. This latter difference may reflect differences in the incidence and/or degree of mental retardation and language impairment in the two samples. Howells and Guirguis' subjects were not described with respect to IQ or language status, so that intellectual or linguistic impairments may have made these determinations difficult. Our most retarded subject was at worst moderately retarded, and the largest proportion of our subjects showed average intelligence and good language. Thus, psychiatric examinations may have yielded clearer results in our sample. In addition, conditions associated with autism-mental retardation, language impairment, and seizure disorder-are themselves associated with increased incidences of psychiatric disorder, independent of their associations with autism (Rutter et al., 1970). Some of our high functioning subjects did recall holding false beliefs at some time during their development, raising some question concerning the absence of delusions in autism. However, these beliefs were relatively unelaborated and may have reflected concrete thinking, social immaturity, and naivete. They may have been similar to "childish fantasies" reported in autistic adolescents by Rutter and Lockyer (1967). Delusions in schizophrenia are elaborate and complex; and productions (language, drawings), symbolic and imaginative. These qualities were lacking in the pro-
ductions of our subjects, just as they are characteristically lacking in the play of autistic children (Cantwell et al., 1978; Wing et al., 1977). The ability to engage in complex imaginative, creative, or symbolic thought may be a feature that differentiates the two disorders and the sorts of false beliefs seen in them. Petty et al. (1984) has recently described schizophrenic disorders in three children, ages 8, 12, and 17 years, with histories suggestive of autism. All had approximately average Wechsler Verbal IQs, suggesting relatively good language function, which would facilitate psychiatric examination. The early diagnoses of autism were, however, retrospective in two cases, while the age of diagnosis and type of professional making the diagnosis was unspecified in the third. Low performance IQs relative to verbal IQs were seen in Petty's sample and are believed to be uncharacteristic of autism (Lockyer and Rutter, 1970). However, sizable differences (22 points) in this direction were also seen in two of our subjects, suggesting heterogeneity in patterns of neuropsychological deficits associated with autism. Similarities between autism and disorders other than schizophrenia have received little attention. The high incidence of stereotyped movements and other motor symptoms, obsessional and compulsive phenomena, and anxiety symptoms would suggest avenues for future behavioral and biological comparisons. The high prevalence of stereotyped movements, particularly involving hands or arms, in this relatively high functioning sample was surprising. Freeman et al. (1981) and Bartak and Rutter (1976) found hand and finger stereotypies to be more prevalent in autistic children with IQs under 70, as compared to those with higher IQs. Freeman et al. (1981) suggested such movements, not required in DSM-III, might be of diagnostic importance independent of IQ. Our experience suggests that such movements occur with a higher frequency and public visibility in more impaired autistic adults but may be equally prevalent in high functioning adults, who might intentionally suppress such movements. Motoric features may well be of diagnostic and neurobiological significance. Methodological techniques are likely to significantly affect prevalence estimates of movements and other features. Naturalistic observations over 5 days yielded higher estimates of stereotyped movements than did psychiatric interviews. Parental reports yielded even higher estimates, a phenomenon seen in Bartak and Rutter's (1976) study as well. Generalizations from these findings are of course limited by our sampling procedures. Our procedures were not designed to yield a sample representative of the growing autistic adult population. Data from previous follow-up studies (DeMyer et al., 1973; Lotter,
AUTISTIC CHILDREN AS ADULTS
1974; Rutter and Lockyer, 1967) suggest that our sample was a relatively high functioning one overall and that our high functioning subgroup was drawn from among the 5-15% of those with the best clinical outcomes. Excluded were the 20-30% of autistic patients who develop epilepsy (Deykin and MacMahon, 1979; Rutter, 1970) and many autistic patients with substantial language impairments and retardation. In addition, the 1-2% of individuals with the best outcomes might have been less likely to learn of our study, reluctant to miss time from work, or reluctant to volunteer for a study that would identify them as deviant. Summary Continuing social impairments and varied psychiatric and behavioral symptoms were seen in our entire sample of 14 men with childhood histories of autism. Three continued to meet DSM-III criteria for autism, while 10 met criteria for autism, residual state. None showed positive schizophrenic symptoms or qualified for an additional DSM-III diagnosis. Stereotyped movements and concrete thinking were highly prevalent (present in at least 70%). Flat affect, generalized anxiety, a lack of normal vocal inflections, peculiar uses of speech and language, language perseveration, and poverty of speech were moderately prevalent (present in 40-50%). Few were competitively employed, and few enjoyed a degree of independence typically associated with adulthood. These findings would suggest that autistic children do not generally, with any great frequency, develop schizophrenia or other adult psychiatric disorders, but rather display continuing, less severe symptoms of their original autism, which significantly limit their social and economic independence. Generalizations are, however, limited by our sampling procedures.
References BARTAK, L. & RUTTER, M. (1976), Differences between mentally retarded and normally intelligent autistic children. J. Aut. Childh. Schizo., 6:109-120. BENDER, L. & FARETRA, G. (1973), The relationship between childhood schizophrenia and adult schizophrenia. In: Genetic Factors in Schizophrenia, ed. A. R. Kaplan. Springfield, Ill.: Charles C Thomas. CANTWELL, D., BAKER, L. & RUTTER, M. (1978), A comparative study of infantile autism and specific developmental receptive language disorder; IV. Analysis of syntax and language function. J. Child Psychol. Psvchiat., 19:351-362. DEMYER, M., BARTON, S., DEMYER, W. E. ET AL. (1973), Prognosis in autism: a follow-up study. J. Aut. Childh. Schizo., 3:199-246. DEYKIN, E. Y. & MACMAHON, B. (1979), The incidence of seizures among children with autistic symptoms. Amer. J. Psychiat., 136:1310-1312.
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DOLL, E. A. (1953), Measurement of Social Competence. Circle Pines, Minn.: American Guidance Service., p. 376. EISENBERG, I.. (1956), The autistic child in adolescence. Amer. J. Psychiat., 12:607-612. - - (1957), The course of childhood schizophrenia. Arch. Neural. Psychiat., 78:69-83. - - & KANNER, L. (1956), Childhood schizophrenia: early infantile autism, 1943-55. Amer. J. Orthopsychiat., 26:556-564. FISH, B. (1977), Neurobiologic antecedents of schizophrenia in children: evidence for an inherited congenital neurointegrative defect. Arch. Gen. Psychiat., 34:1297-1313. FREEMAN, B. J., RITVO, E. R., SCHROTH, P. C. ET AL. (1981), Behavioral characteristics of high- and low-IQ autistic children. Amer. J. Psychiat., 138:25-29. HERJANIC, B. & CAMPBELL, ,J. W. (1977), Differentiating psychiatrically disturbed children on the basis of a structured interview. J. Abnorm. Child Psychol., 5:127-135. HOWELLS, J. G. & GlJIRGlJIS, W. R. (1984), Childhood schizophrenia 20 years later. Arch. Gen. Psychiat., 41:123-128. KANNER, I.. (1943), Autistic disturbances of affective contact. Nerv. Child,2:217-250. - - RODRIQUEZ, A. & ASHENDEN, B. (1972), How far can autistic children go in matters of social adaptation? J. Aut. Childh. Schizo., 2:9-33. KOLVIN, I. (1971), Studies in the childhood psychoses: I. Diagnostic criteria and classification. Brit. J. Psychiat., 118:381-384. - - OUNSTED, C., HUMPHREY, M. & McNAY, A. (1971), II. The phenomenology of childhood psychoses. Brit. J. Psychiat., 118:385-395. LOCKYER, I.. & RUTTER, M. (1970), A five to fifteen year follow-up study of infantile psychosis; IV. Patterns of cognitive ability. Brit. J. Soc. Clin. Psychol., 9:152-163. LOTTER, V. (1974), Social adjustment and placement of autistic children in Middlesex: a follow-up study. J. Aut. Childh. Schizo., 4:11-32. MAZlJRE, C. & GERSHON, E. (1979), Blindness and reliability in lifetime psychiatric diagnosis. Arch. Gen. Psychiat., 36:521-525. ORNITZ, E. M. (1974), The modulation of sensory input and motor output in autistic children. J. Aut. Childh. Schizo., 4:197-215. - - (1983), The functional neuroanatomy of infantile autism. Int. J. Neurosci., 19:85-124. PETTY, I.. K, ORNITZ, E. M., MICHELMAN, J. D. ET AL. (1984), Autistic children who become schizophrenic. Arch. Gen. Psychiat., 41:129-135. ROBINS, 1.., HELZER, J., CROUGHAM, J. & RATCLIFFE, K. (1981), National Institute of Mental Health Diagnostic Interview Schedule. Arch. Gen. Psychiat., 38:381-389. RUMSEY, J. M., DUARA, R., GRADY, C. ET AL. (1985), Brain metabolism in autism: resting cerebral glucose utilization as measured with positron emission tomography (PET). Arch. Gen. Psychiat., 42:448-455. RUTTER, M. (1970), Autistic children: infancy to adulthood. Seminars in Psychiatry, 2:435-450. - - & LOCKYER, I.. (1967), A five to fifteen year follow-up study of infantile psychosis; I. Description of Sample. Brit. J. Psychiat., 113:1169-1182. - - GRAHAM, P. & YULE, W. (1970), A Neuropsychiatric Study in Childhood. London: Heineman. VINELAND SOCIAL MATURITY SCALE (1965), Circle Pines, Minn.: American Guidance Service. WATT, N. M. (1976), Two factor index of social position: Amherst modification. Unpublished manuscript; available from Norma Watt, Ph.D., Department of Psychology, Child Study Center, 2460 S. Vine St., Denver, Colorado. WING, L., GOULD, J., YEATES, S. R. ET AL. (1977), Symbolic lay in severely mentally retarded and in autistic children. J. Child Psychol. Psychiat., 18:351-362.
Autism is a relatively new syndrome, having first been identified by Professor Leo Kanner of -Iohns Hopkins School of Medicine in 1943. Initially viewed as continuous with adult schizophrenia, the term "childhood schizophrenia" was also applied to this syndrome. Kanner's (l94;~) position that autism was unique and distinct from schizophrenia stimulated controversy concerning the continuity of these disorders (Bender and Faretra, 197:~; Fish, 1977). Follow-up studies of autistic children (DeMyer et al., 1973; Eisenberg, 1956, 1957; Eisenberg and Kanner, 1956; Kanner et al., 1972; Lotter, 1974; Rutter, 1970; Rutter and Lockyer, 1967) have shown that the natural course of autism is gradual symptomatic improvement with persistent, residual social impairments. Despite great variability in intellectual and linguistic functioning across patients, there is continuity within individuals, and IQ and the presence of communicative speech by age 5 years are good prognostic indicators. These studies have also shown that autistic children do not develop hallucinations and delusions, but frequently develop seizures, findings which support Kanner's view of discontinuity. However, the mean age at follow-up in these more systematic studies is 15 years, which falls short of the age of greatest risk for major adult psychiatric disorders. In addition, comparative studies of children with early onsets (under 2 years) versus late onsets (above 11 years) of illness (Kolvin 1971; Kolvin et al., 1971) have found differences in clinical symptoms, thus
providing additional validation of discontinuity. Kolvin (1971) and Kolvin et al. (1971) found that only those psychotic children with late onsets showed delusions, hallucinations, and thought disorder, as seen in schizophrenia, while early onset cases showed gaze avoidance, abnormal preoccupations, self-isolating behavior, echolalia, and hyperactivity more often than did late onset cases. Influenced by these studies, the DSM-III reflects the notion of discontinuity held by the majority of workers in this field. Infantile autism is classified as a pervasive developmental disorder, and early onset and absence of hallucinations, delusions, and incoherence are required for its diagnosis. A DSM-III diagnosis of schizophrenia or other psychosis in children requires that the patient meet criteria for the diagnosis of those disorders in adults; no unique set of criteria is used for diagnosing schizophrenia or other psychoses in childhood. The present study examined psychiatric and behavioral outcomes in 14 men with clearly documented early childhood diagnoses of autism compatible with DSM-III criteria. Nine subjects were unusually high functioning, a factor which facilitated satisfactory examinations of mental status. This paper reports on the long-term continuity in symptoms and disability, of particular interest because of the advanced age of this sample as compared with other systematically studied groups. Given the high levels of functioning in our sample, we also attempted to glean retrospective, subjective accounts of the disorder, including reports about delusions and the quality of relationships with parents.
Received May 21, 1984; accepted July 9, 1984. Please address correspondence to: Judith M. Rumsey, Ph.D., Section on Child Psychiatry, National Institute of Mental Health, Building 10, Room 6N-240, 9000 Rockville Pike, Bethesda, MD 20205. The authors thank the National Society for Autistic Adults and Children and the Linwood Center in Ellicott City, Maryland, for their invaluable assistance in announcing our study to families and the families who participated in this research.
Method Subjects Autistic men were sought nationwide through organizations and school programs which serve children and adults with autism for participation in a PET
0002-71:l8/8,'j/2404-046.') $02.00/0
466
RUMSEY ET AL.
scan study which required subjects to be at least 18 years of age and in good physical health (Rumsey et al., 1985). Only patients with clearly documented histories of autism compatible with DSM-III were considered as potential participants. Exclusionary criteria were: (1) known infectious, metabolic, or neurological disease; (2) seizures; (3) inability to discontinue any medications; (4) inability to cooperate with medical tests; (5) history of highly invasive medical procedures to the head (e.g., neurosurgery); and (6) hard neurological findings (e.g., frank hydrocephalus), focal signs, and any gross neurological dificits other than mental retardation. (See one exception below.) "Soft" neurological signs and isolated abnormalities of tone, reflexes, or movement, characteristic of developmental disorders, were expected and did not constitute a basis for exclusion. Evaluations included a medical history, general physical and neurological examinations, including routine blood and urine chemistry determinations, EEG, and CT scan. Fourteen men, 18-39 years of age (X = 28, S.D. = 6.8), were admitted to the study. All were evaluated by a psychiatrist not associated with the study to determine their ability to give informed consent. Dependent upon the outcome, patients and/or parents discussed research procedures with an investigator and signed a consent form which described the purposes of the study and testing procedures. Thirteen were seen as inpatients, and one as an outpatient, over 5 days. Seven had been diagnosed as autistic by Professor Leo Kanner, one by a student of his, and five by other physicians. One subject had suffered a sudden loss of sight in one eye as a teenager, which was attributed to thrombosis of the retinal artery, but was otherwise healthy and free of other major neurological findings. His unusually good outcome and the clear independence of the partial sensory impairment from his autism led us to include him in the clinical follow-up. This sample was heterogeneous despite the application of these specific selection criteria. Therefore, they are subgrouped as follows for descriptive purposes: Nine patients with verbal and performance IQs above 80 and good language skills constitute our "high functioning subgroup." Our "lower functioning subgroup" consists of two patients with some mental retardation and three with specific language deficits (mutism or limited speech) with approximately average or higher performance IQs. (Specific test scores follow.) Structured Psychiatric Interviews Patients were interviewed by a child psychiatrist using the NIMH Diagnostic Interview Schedule (DIS) (Robins et al., 1981) and portions of the Diagnostic
Interview for Children and Adolescents (DICA) (Herjanie and Campbell, 1977). In addition, subjects with good language were questioned about early memories and specifically about "why" they engaged in rituals, resisted change, and the like and about the quality of their relationship with each parent. Together these interviews provided comprehensive information on lifetime and current symptoms. Current DSM-III diagnoses were made on the basis of these interviews, behavioral observations, and the patient's history. Parent Interviews Mothers of 13, fathers of 7, and an advocate-trainer of 1 subject were interviewed regarding the patient's history and current status, thus providing validating and supplemental information. In addition, parents were interviewed for information about themselves and other family members with a modified version of the Schedule for Affective Disorders and Schizophrenia (SADS)-Form L (Mazure and Gershon, 1979). Parental social class was rated on the basis of occupation and education of the head of household with a modification of the Hollingshead index (Watt, 1976). The Vineland Social Maturity Scale (1965) was completed by a psychologist using parents and the advocate-trainer as informants. This widely used clinical measure of social-adaptive functioning includes items that tap communication, socialization, locomotion (e.g., independent travel), occupational pursuits and achievements, self-direction, and self-help skills from infancy to adulthood. It yields a global social age score, which is divided by the patient's chronological age up to a ceiling of 25 years and multiplied by 100 to yield a social quotient (SQ). An average score is 100 ± 5, and standard deviations range from 6 to 12 within the age range studied here (Doll, 1953). The SQ is less sophisticated psychometrically and not precisely comparable to Wechsler IQ scores. However, some general comparisons of the two are possible. Additional Measures The 5-day period of admission and extensive study allowed staff to observe behaviors within the social context of the ward and various laboratories that were not necessarily observed in the psychiatric interview situation. A written record of unusual behaviors seen throughout the week was made for each patient, usually adding information on motor symptoms and abnormal social behaviors. Patients were also tested with the Wechsler Adult Intelligence Scale (WAIS) and Wide Range Achievement Test (WRAT). Symptom Patterns and Behavioral Characteristics Table 1 lists the number of patients showing various symptoms identified in psychiatric interviews and/or
TABLE 1 Psychiatric and Behavioral Characteristics of Autistic Men, as Assessed by Psychiatric Interoieuis" and Behavioral Observations Made Over 5-Day Hospitalizations No. and Type of Subjects Showing Symptom
Characteristic
Social relating: Lacks friends Aloof Marked social improprieties' Oppositional Affect and anxiety: Flat affect Generalized anxiety Depression Silly, immature, teasing Separation anxiety Phobic Mania Thought processes: Concrete Perseverative Impoverished (content of speech) Circumstantial or irrelevant Obsessional thinking Racing thoughts, pressured speech Positive schizophrenic symptoms: Hallucinations Delusions Incoherence Motor symptoms: Stereotyped repetitive movements: Arm, hand, or finger movements Pacing Rocking Vocal tics Compulsions Hyperactivity Speech and language: Peculiar uses of speech and language: Talks to self Uses words or phrases with special meanings Perseveration, repetitive questions or phrases Poverty of speech (little spontaneous speech) Monotone, lack of normal vocal inflections Word or phrase repetition" Highly stereotyped Occasional stuttering Sensory/perceptual: Smells objects Hypersensitive to light Hypersensitive to sound Other: Attentional deficits Somatization
High functioning subgroup
Lower functioning subgroup
Total Sample
WAIS VIQ and PIQ 82-126b
Language-impaired WAIS PIQ 88-129b
Mentally retarded WAIS VIQ and PIQ 48-77 b
(N=9)
(N=3)
(N=2)
(N= 14)
N(%)
N(%)
N(%)
N(%)
8 4 3 3
3 (00) 1 (33) 0(0) 0(0)
2 (00) 1 (50) 1 (50) 0(0)
13 6 4 3
5 (56) 6 (67) 2 (22) 2 (22) 1 (11) 0(0) 0(0)
1 (33) 0(0) 0(0) 0(0) 0(0) 1 (33) 0(0)
1 (50) 1 (50) 0(0) 0(0) 1 (50) 0(0) 0(0)
7 4 3 3 4 1
1 (33) 0(0) 0(0) 0(0) 0(0) 0(0)
2 (00) 1 (50) 2 (00) 1 (50) 0(0) 0(0)
0(0) 0(0) 0(0)
0(0) 0(0) 0(0)
0(0) 0(0) 0(0)
7 6 1 2 1 3 1
(78) (67) (11) (22) (11) (33) (11)
3 (100) 3 (100) 2 (67) 1 (33) 2 (67) 0(0) 0(0)
2 (100) 2 (100) 1 (50) 0(0) 1 (50) 0(0) 1 (50)
5 4 2 4 3 4 4 1 1
(56) (44) (22) (44) (33) (44) (44) (11) (11)
1 (33) 0(0) 0(0) 1 (33) 1 (33) 1 (33) 0(0) 0(0) 0(0)
1 (50) 1 (50) 1 (50) 2 (100) 2 (100) 1 (50) 0(0) 2 (100) 0(0)
7 (50) 5 (36) 3 (21) 7 (50) 6 (43) 6 (43) 4 (29) 3 (21) 1 (7)
1 (11) 1 (11) 0(0)
0(0) 0(0) 0(0)
0(0) 0(0) 0(0)
1 (7) 1 (7) 0(0)
2 (22) 1 (11)
0(0) 0(0)
1 (50) 0(0)
3 (21) 1 (7)
(89) (44) (33) (33)
(78) (44) (33) (33) (44) (1)
(93) (43) (29) (21)
7 (50) 7 (50) 2 (4) 2 (14) 2 (14) 1 (7) 0(0) 10(71) 5 (36) 5 (36) 4 (29) 4 (29) 1 (7)
0(0) 0(0) 0(0) 12 11 4 3 4 3 2
(86) (79) (29) (21) (29) (21) (14)
• Psychiatric interviews were the NIMH Diagnostic Interview Schedule (DIS) and the Washington University School of Medicine's Diagnostic Interview for Children and Adolescents (OICA). b WAIS VIQ and PIQ are Verbal and Performance IQs, respectively. , Marked social improprieties refer to behaviors such as inappropriate nudity or undress on the ward and socially inappropriate comments. d This refers to repetitions of a word or several words, which resemble stuttering in that the subject appears motorically "stuck" and unable to move on to the next word. This contrasts with language perseveration, which involves the use of stereotyped utterances without such motor difficulty, and which may reflect ideational perseveration.
468
RUMSEY ET AL.
direct observations. Parental reports sometimes suggested that symptoms were present which were not observed by us. This supplemental information is included in the following descriptions, but excluded from Table 1 because it represents a less systematic data base. Social Relatedness and Interactions. As seen in Table 1, all patients continued to exhibit social impairments. All would certainly be viewed as peculiar by the layman, a factor which affected their ability to function independently. Parents generally decribed their sons as loners, and only one patient reported any current friendships. This individual, who was gregarious and underinhibited, related primarily to church groups. Others had found social outlets through school clubs and social activities organized by community mental health centers or religious groups, but had difficulty maintaining relationships when the organizations' structure was absent. None were married or had contemplated marriage. Several patients resembled young children in their general demeanor. Some high functioning men exhibited highly stereotyped and/or inappropriate social behaviors. Examples include repetitions of a fixed script when meeting people and inappropriate touching of others' clothing. While some desired friendships, but lacked social competencies, others lacked social motivation either currently or historically. High functioning subjects' memories concerning childhood interactions with parents were concrete and unelaborated. They universally reported feeling that their parents were "on their side" and trustworthy and attributed their unaffectionate childhood behavior to "lack of interest," denying conflict and anxiety. Several, however, voiced feelings of resentment and jealousy toward siblings. Some previously "disinterested" individuals expressed current social motivation, while others remained aloof. Marked social improprieties, such as inappropriate nudity or partial undress on the ward and inappropriate comments, were also noted, even in some high functioning patients. Such behaviors appeared to stem from poor social awareness and immaturity in all cases, rather than sexual interest. Affect and Anxiety. Although none met DSM-III criteria for affective disorder, several showed various affective symptoms. Half the sample showed affective flattening, manifested in monotonous intonation, restricted facial expression, and other nonverbal behavioral deficits (e.g., little body movement). Chronic, generalized anxiety was seen in half of the group. In addition, caretakers of six patients, five of whom were high functioning, reported infrequent temper outbursts, stimulated by frustration and an inability to cope with environmental demands. These incidents
involved aggression against others, destruction of property, and, in some cases, stereotyped movements such as arm flapping. In all cases, they appeared "out of character." Precipitating events included absentmindedness on the part of the patient (e.g., forgetting an airline ticket or one's driver's license), pressure induced by having to make independent decisions, and, in one case, trivial frustrations or environmental changes, such as a lack of soap in a bathroom. Thought Processes. A majority of patients (approximately %) were concrete in their thinking. Other more variable features included perseverative, impoverished, circumstantial, and obsessional thinking. None were incoherent, and even those with limited speech were comprehensible. While no patient showed formal thought disorder (e.g., loose associations, blocking), some parents reported immature beliefs and naivete (e.g., beliefs in fictional characters like Santa Claus until late adolescence). Positive Schizophrenic Symptoms. Hallucinations, delusions, and incoherence, which constitute positive symptoms of schizophrenia, were absent at follow-up. However, two high functioning patients reported childhood memories which raised some question about the former presence of delusions. One stated that, at approximately age 7, he believed that poison gas came out of the wall plugs. This resulted in a drive to cover up all electrical outlets. Another recalled that, at age 14, he thought his clothing was too small and believed that others knew of this thought. While neither of these two retrospective reports presents certain evidence of delusions, they do raise questions about the complete absence of delusions in autism. Motor Symptoms. Stereotyped, repetitive movements were highly prevalent and were directly observed in 12 patients (86%), including 7 high functioning patients. High functioning patients seemed to intentionally suppress these movements in social situations, and some appeared embarrassed when seen engaging in such movements. When parental reports are included, all patients continued to show some stereotyped movements. In some instances, such movements were reported by parents to occur in response to stress or emotional upset. The movements, both observed and reported, most frequently involved the hands or arms. Individual finger movements, rotating movements of the hand, arm flapping, and shaking of the hands or arms were characteristic. Hand-biting was reported by several parents and rhythmic movements of whole bodyrocking and pacing-were also seen. In addition to these more bizarre movements, several patients repetitively tapped papers and table surfaces and interrupted their writing to repetitively tap pencils and
AUTISTIC CHILDREN AS ADULTS
pens against their fingers. Individuals generally had a repertoire of one or two particular movements, but these varied among individuals. Other motor symptoms included vocal tics (grunts, squeaks, hissing sounds), seen primarily in lower functioning patients, compulsions, and hyperactivity. Compulsions included putting objects in their proper places, handwashing, and stereotyped touching of clothing and other objects. Peculiar gaits and limb postures (e.g., flexed arm posture) were also noted. Speech and Language. Language status ranged from normal to complete mutism. Impairments included very limited, dysphasic speech, as well as highly deviant speech. A single mildly retarded patient showed fluent and grammatical, but repetitive and nonsenical speech ("language deviance," rather than deficit). He repetitively asked hospital staff questions about his childhood acquaintances. The most common abnormalities, particularly in the high functioning subgroup, involved speech and its social use. Speech was often monotonous, lacking normal intonational contours. Several patients repeated words or phrases within a sentence, appearing motorically "stuck" and unable to move on to the next word, giving their speech a stammering quality. Several patients mumbled to themselves when with others or talked to themselves when alone. Some held idiosyncratic meanings for conventional words and phrases, seemingly for self-amusement or -stimulation. Poverty of speech and stereotyped speech were also seen with some frequency. Sensory-Perceptual. Although there was little evidence of sensory-perceptual disturbance, this category was coded because of theories which emphasize such features (Ornitz, 1974, 1983). A single patient showed an unusual tendency to smell objects, while another showed some sniffing movements when exploring a room. One patient also kept his room dim and complained about sunlight when his draperies were open. No behavior suggesting hyperacusis was observed. Some parents reported that their sons still cover their ears with their hands and show other stereotyped behavior in reaction to stress, rather than auditory stimulation. One patient insisted on keeping his room very warm and generally wore excessive clothing to keep warm. Other. Varying "attentional deficits" were coded in three patients. These included unusual slowness in responding, as well as difficulties in attending to the examiner which may have stemmed from anxiety. Two individuals showed some unusual staring and inappropriate smiling. Although several parents reported their sons had unusually good memories, particularly for factual information like calender dates, there were
469
also reports of absentmindedness, or failure to adaptively draw upon stored memories to meet practical needs.
DSM-III Diagnoses While all patients displayed residual symptoms, these varied considerably. The three patients who displayed specific language deficits as well as the one with highly deviant (repetitive) speech met DSM-III criteria for Infantile autism, full syndrome present (299.00). The remaining 10 patients, 9 of whom were high functioning, met DSM-III criteria for Autism, residual state (299.01). The presence of good language was the major disqualifying factor for a current diagnosis of "autism, full syndrome." All had shown severe language impairments in early childhood, which included delayed onsets of speech and immediate and delayed echolalia, and, in fact, three showed little or no communicative speech until after 5 years of age, according to parental reports. Their current linguistic abilities were good although abnormalities of speech (e.g., dysprosodies) were apparent. Varying degrees of social deficits and other phenomena that might be regarded as "bizarre responses to the environment" (e.g., stereotyped behavioral patterns) remained. Because most current symptoms appeared to be residuals of early autism, no additional DSM-III diagnoses were warranted. However, in the absence of such a history, one might have considered the diagnoses of Generalized anxiety disorder (300.02), Schizoid personality (301.20), and Simple phobia (300.29) for some of these individuals. Obsessional preoccupations and compulsive phenomena were also present but lacked an ego-dystonic quality and thus would not support the diagnosis of Obsessive-compulsive disorder (300.30). A diagnosis of Compulsive personality disorder (301.40), on the other hand, would not have encompassed additional symptoms displayed by these patients. None of these patients showed current evidence of delusions, hallucinations, or incoherence, the features which differentiate between DSM-III diagnoses of Pervasive developmental disorder, residual state (299.01, 299.91) and Schizophrenia (295.x). Adaptive Functioning Table 2 lists each subject's Vineland SQ, level of educational attainment, employment status, and living situation, as well as age and verbal and performance IQs. As shown here, two high functioning patients completed a year or more of junior college, while most others completed high school with or without receiving diplomas. All of the lower functioning patients received special education into late adolescence or early adulthood. Basic reading, spelling, and math
470
RUMSEY ET AL. TABLE 2 Social-Adaptive Functioning of Autistic Men
10
WAIS IQs
Age
Vineland Social Quotient
(yr)
Verbal
39
108
108
68
2
36
110
113
80
3
31
106
111
88
4 5
30 27
99 103
102 81
72 80
6
22
117
115
64
7
21
97
97
57
8
20
82
86
80
9
18
109
126
56
10
37
Severe deficit
11
32
No speech
12
22
62
129 (3 subtests) 88 (4 subtests) 93
13
32
77
55
56
14
25
48
60
30
Performance
Education Regular high school diploma High school equivalency
Employment
Residence
Sheltered workshop
With parents
Janitor
Supervised apartment" With parents
Regular high school diploma Eighth grade One year junior college
Cab driver
Associate degree, junior college High school, with parttime special education High school equivalency
Key punch operator
Unemployed Library aid
Apartment Supervised apartment" With parents With parents
32
Special education through high school Special education
Special job trainprogram Part-time vocational training Part-time special college student Sheltered workshop
32
Special education
Sheltered workshop
State hospital
45
Special education through high school Special education through high school Special education
Unemployed
With parents
Attends day program at state hospital Special job program
With parent
With parents With parents With parents
Group home
" Supervision is minimal and consists of weekly visits by a counselor, who troubleshoots and helps patient plan.
skills, as assessed by the Wide Range Achievement Test (WRAT), were generally consonant with education and IQ scores. Therefore, as measured by the most basic of academic skills, these individuals received considerable benefits from their educations. According to parents, two high functioning subjects also had done well in foreign language courses. This was notable in light of their early language impairments. Several showed relative strengths in math. However, social-adaptive functioning, as reflected in employment status, living arrangements, and Vineland SQs, fell below expectations based on IQs. As shown in Table 2, even those few individuals who lived apart from parents received some professional or parental support and supervision. Lower functioning patients, of course, were more dependent on others. Only four of the nine high functioning patients were competitively employed (see Table 2); and these, in routine jobs with limited decision making and minimal social interaction. One exception to this was the position of cab driver, which requires more social interaction and independence than did the other jobs held. One high functioning patient was fired from a job because of his compulsive touching of other people and other inappropriate, intrusive social behavior. Another high functioning patient worked in a shel-
tered workshop for retardates because of limitations imposed by his rigidity, obsessional preoccupations, and anxiety about schedules. The three youngest high functioning patients, ages 18-21, were all receiving some additional education or job-training and might be capable of holding competitive jobs in the future. One patient's compulsive habits (e.g., handwashing), obsessional questioning, oppositional personality, and rigidity constituted interfering factors for job success at the time he was seen. Another generally worked slowly and had some timeconsuming compulsions (e.g., hand and arm washing) that could limit his job opportunities. A third demonstrated a talent for math and computer programming, but displayed poor initiative, a factor which might be compensated for by considerable supervision. In addition to patient-related factors (e.g., competencies, maladaptive behaviors), "parent factors" were influential in determining employment outcome. Only two high functioning patients obtained their current jobs on their own, and one of these had received help obtaining his first jobs. Parents and agencies, but particularly parents, played a major role in finding employers willing to give their sons a chance. The Vineland SQs were generally low, relative to IQs, sometimes strikingly so. Low SQs seen in high
AUTISTIC CHILDREN AS ADULTS
functioning patients primarily reflected deficits in areas of self-direction, socialization, and occupational achievements. This is illustrated in the sample Vineland profile shown in Figure 1. As shown here, the emphasis of this scale shifts from self-help items to self-direction, socialization, and occupational skills with increasing age. The failures of this group occur on higher level items and reflect poor initiative, restrictions in social relationships, stereotyped behavioral patterns, and, in some instances, restricted independent travel. Even those patients who function well on their jobs may follow inflexible routines with respect to dress (e.g., wearing an established set of clothing each day of the week) and may be restricted to routine routes in traveling to and from work. Most of these individuals require help with nonroutine matters, e.g., financial planning, dealing with the phone company. Though basic self-help skills are present, some need reminders and feedback from parents about grooming and dress. While these limitations are prevalent, an exception is again seen in one individual who obtained several jobs on his own, files his own taxes, purchased his own automobile, directs his own financial affairs, and vacations VINELAND SOCIAL MATURITY SCALE CA TEGORY PROFILE
25 ------------------------20 --------------------18
-----------------
- 25 20 18
15 12
15
12 ~ 11
VI
11
w
>- 10 ~ 9
10
~
8
9
w
;t.
g VI
8 7 6
7 6
5
5 4
4
3
3 2
2
1 -
o
-- 1 -+----J"i"---"'''''t'---t--.....,..-....oVfI-~L......L.O SELF-HELP SELF-HELP SELF LOCOMOTION GENERAL EATING DIRECTION I & travail SELF-HELP COMMUNSOCIALOCCUPATION DRESSING ICATION IZA TlON
PATIENT'1Q CHRONOLOGICAL AGE ?1 WAIS VERBAL IQ ill WAIS PERFORMANCE IQ ill SOCIAL AGE ~ SOCIAL QUOTIENT
~
FIG. 1. Item composition of Vineland Social Maturity Scale and sample profile of a high functioning adult male with autism, residual state. Shaded boxes reflect positive item scores, or competencies, while blank boxes reflect failed items.
471
alone out of state, showing good self-direction and isolated deficits in social relating. Lower functioning patients showed more pervasive deficits involving self-direction, socialization, communication, occupational achievements, and independence of travel (locomotion). Of the five lower functioning patients, two were unemployed, while three worked in highly supervised settings. Those with high nonverbal IQs were able to use their visuospatial skills to do work such as disassembling and sorting machine parts.
Parental Status and Experiences No history of major psychiatric illness was identified in parents or first degree relatives, although parents did suffer emotional distress because of difficulties inherent in the raising of handicapped children. Parental social class was as follows: 6 upper-upper, 2 lower-upper, 3 upper-middle, and 2 lower-middle. This bias toward higher socioeconomic status was likely a function of biased sampling procedures. Without exception, parents reported early experiences of going from clinic to clinic in an attempt to get a diagnosis they could accept. The usual diagnosis was mental retardation, which did not "fit" with parents' impressions. When these patients were young, autism was still unfamiliar to many people in the mental health field. When autism was diagnosed, parents came away feeling that they were being held responsible and accused of poor parenting. Once able to work through their feelings, these parents made intensive, persistent efforts to obtain help for their children. Support of national organizations such as those established for many chronic diseases was unavailable. Thus, these parents found themselves part of a small group laboring to establish resources for their autistic children. One common feature of the families was a relative lack of long-term planning for the patients, a possibility attributable to several factors. Several parents expressed longstanding denials of the irreversible nature of the disorder. Demands of everyday living also seemed to infringe on long-term planning. And finally, most parents were unsure of how to proceed. Some set up of trusts to provide for financial and day-to-day support they knew would eventually be needed. Others made plans for other family members to accept this responsibility in the future. Casework with this group involved facilitating these plans and involving social agencies that work with handicapped adults. In summary, the parents of these subjects were highly committed to helping their children achieve their maximum potential. We found them to be warm, dedicated, and unrelenting in their efforts.
RUMSEY ET AL.
472
Discussion Each of the patients studied had retained autistic symptoms. While certain "negative," or deficit, symptoms of schizophrenia-most notably flat affect and concrete thinking-were prevalent, no patient showed positive symptoms of schizophrenia. In addition, individual symptoms (but not full syndromes) of anxiety, schizoid, and obsessive-compulsive disorders were seen. Thus, no specific links to schizophrenia were suggested. In contrast to this, two recent follow-up reports on "psychotic" children have suggested possible associations between autism and later-developing schizophrenia. Howells and Guirguis (1984) followed up 10 childhood psychotics with onsets before 30 months and 10 with onsets between 30 months and 11 years. The entire group showed residual symptoms and "schizophrenic states" characterized by negative symptoms (Kraepelin's simple schizophrenia, DSM-III schizophrenia residual state, and Crow's type III schizophrenia). None showed any of Schneider's "first-rank" symptoms-hallucinations and delusions, although they were "suspected" in 10 patients, 2 of whom were from the early onset group. The findings of residuals and negative symptoms in 10 early onset "psychotics" are consistent with our findings, whereas the suspicion of positive symptoms is not. This latter difference may reflect differences in the incidence and/or degree of mental retardation and language impairment in the two samples. Howells and Guirguis' subjects were not described with respect to IQ or language status, so that intellectual or linguistic impairments may have made these determinations difficult. Our most retarded subject was at worst moderately retarded, and the largest proportion of our subjects showed average intelligence and good language. Thus, psychiatric examinations may have yielded clearer results in our sample. In addition, conditions associated with autism-mental retardation, language impairment, and seizure disorder-are themselves associated with increased incidences of psychiatric disorder, independent of their associations with autism (Rutter et al., 1970). Some of our high functioning subjects did recall holding false beliefs at some time during their development, raising some question concerning the absence of delusions in autism. However, these beliefs were relatively unelaborated and may have reflected concrete thinking, social immaturity, and naivete. They may have been similar to "childish fantasies" reported in autistic adolescents by Rutter and Lockyer (1967). Delusions in schizophrenia are elaborate and complex; and productions (language, drawings), symbolic and imaginative. These qualities were lacking in the pro-
ductions of our subjects, just as they are characteristically lacking in the play of autistic children (Cantwell et al., 1978; Wing et al., 1977). The ability to engage in complex imaginative, creative, or symbolic thought may be a feature that differentiates the two disorders and the sorts of false beliefs seen in them. Petty et al. (1984) has recently described schizophrenic disorders in three children, ages 8, 12, and 17 years, with histories suggestive of autism. All had approximately average Wechsler Verbal IQs, suggesting relatively good language function, which would facilitate psychiatric examination. The early diagnoses of autism were, however, retrospective in two cases, while the age of diagnosis and type of professional making the diagnosis was unspecified in the third. Low performance IQs relative to verbal IQs were seen in Petty's sample and are believed to be uncharacteristic of autism (Lockyer and Rutter, 1970). However, sizable differences (22 points) in this direction were also seen in two of our subjects, suggesting heterogeneity in patterns of neuropsychological deficits associated with autism. Similarities between autism and disorders other than schizophrenia have received little attention. The high incidence of stereotyped movements and other motor symptoms, obsessional and compulsive phenomena, and anxiety symptoms would suggest avenues for future behavioral and biological comparisons. The high prevalence of stereotyped movements, particularly involving hands or arms, in this relatively high functioning sample was surprising. Freeman et al. (1981) and Bartak and Rutter (1976) found hand and finger stereotypies to be more prevalent in autistic children with IQs under 70, as compared to those with higher IQs. Freeman et al. (1981) suggested such movements, not required in DSM-III, might be of diagnostic importance independent of IQ. Our experience suggests that such movements occur with a higher frequency and public visibility in more impaired autistic adults but may be equally prevalent in high functioning adults, who might intentionally suppress such movements. Motoric features may well be of diagnostic and neurobiological significance. Methodological techniques are likely to significantly affect prevalence estimates of movements and other features. Naturalistic observations over 5 days yielded higher estimates of stereotyped movements than did psychiatric interviews. Parental reports yielded even higher estimates, a phenomenon seen in Bartak and Rutter's (1976) study as well. Generalizations from these findings are of course limited by our sampling procedures. Our procedures were not designed to yield a sample representative of the growing autistic adult population. Data from previous follow-up studies (DeMyer et al., 1973; Lotter,
AUTISTIC CHILDREN AS ADULTS
1974; Rutter and Lockyer, 1967) suggest that our sample was a relatively high functioning one overall and that our high functioning subgroup was drawn from among the 5-15% of those with the best clinical outcomes. Excluded were the 20-30% of autistic patients who develop epilepsy (Deykin and MacMahon, 1979; Rutter, 1970) and many autistic patients with substantial language impairments and retardation. In addition, the 1-2% of individuals with the best outcomes might have been less likely to learn of our study, reluctant to miss time from work, or reluctant to volunteer for a study that would identify them as deviant. Summary Continuing social impairments and varied psychiatric and behavioral symptoms were seen in our entire sample of 14 men with childhood histories of autism. Three continued to meet DSM-III criteria for autism, while 10 met criteria for autism, residual state. None showed positive schizophrenic symptoms or qualified for an additional DSM-III diagnosis. Stereotyped movements and concrete thinking were highly prevalent (present in at least 70%). Flat affect, generalized anxiety, a lack of normal vocal inflections, peculiar uses of speech and language, language perseveration, and poverty of speech were moderately prevalent (present in 40-50%). Few were competitively employed, and few enjoyed a degree of independence typically associated with adulthood. These findings would suggest that autistic children do not generally, with any great frequency, develop schizophrenia or other adult psychiatric disorders, but rather display continuing, less severe symptoms of their original autism, which significantly limit their social and economic independence. Generalizations are, however, limited by our sampling procedures.
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