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Abstract | Summary
| Original Article
Adult Outcome for Children with Autism
Howlin P, Goode S, Hutton J, Rutter M
Journal of Child Psychology and Psychiatry 2004; 45(2): 212-229
Bottom Line
What happens to adults who
were diagnosed with autism
as children?
- The core symptoms
of autism, that is, impaired
social skills and verbal
or nonverbal communication
and restricted interests
persist into adulthood.
- Most of the adults
followed up in adulthood
still required assistance
with day-to-day living.
- Some adults had
completed higher education
or vocational training, had
friends, and were able to
keep a job.
- The majority, however,
were unable to hold down
a job or to complete formal
schooling.
- Adults with a childhood
IQ of less than 70 fared
the worst.
- Programming must
be made available for adults
with autism.
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Question: What is known about the long-term outcome of children with autism who had a recorded performance (nonverbal) IQ of 50 and above at the time of diagnosis?
Background: The natural history of autism has been only rarely studied, but we need to know more about how children with autism grow and change throughout the lifespan to help plan for services in the community. This study looked at adults who had been diagnosed with autism in childhood and is, to date, the first study with such a long follow-up period (18 years).
Design: Follow-up study.
Setting: The Maudsley Hospital, London, England.
Participants: 68 adults with a formal diagnosis of autism made in childhood and a performance (nonverbal) IQ of 50 or greater at the start of this longitudinal study.
Assessment of prognostic factors: Social, language, cognitive and behavioural outcomes; stability of IQ, and relationship of cognitive ability to persistent autistic behaviours.
Main Outcome Measures: The researchers used tests to determine if relationships existed between childhood IQ and language, social communication, and behavioural functioning in adulthood. The ADI-R, an interview with the parents or other caregivers as the informants, was used to determine if the severity of restricted, stereotyped behaviours seen in childhood continued into adulthood and also looked at the use of language.
Main Results: Language and IQ: All of the participants with an IQ lower than 70 had language problems and about two thirds had either severe problems or no speech. In the 70 to 99 IQ group, more than half had moderate or severe problems, and 3/10 of those with an IQ over 100 had severe language problems. Abnormal language use was not related to any one specific IQ level group. Reading comprehension and spelling skills were impaired across all groups, although participants with IQs of less than 70 had the lowest scores. Repetitive behaviours persisted into adulthood, most especially in the under 70 IQ group. For those in the over 70 IQ group, the symptoms were milder, but there was no significant difference between the 70-99 IQ group and the over 100 IQ group in the rate of occurrence. Overall, performance IQ scores were stable but the scores were most stable in the 70+ group. The verbal IQ was not as stable. While the majority improved in use of language, they remained impaired.
Based on the abilities to live independently, have friendships, and hold down a job, only about 12% of all the participants were rated as having a ?Very Good? outcome, that is, they had a paying job, a few friends, and a higher degree of independence; 10% were rated as having a ?Good? outcome; 19% had a ?Fair? outcome; 46% had a ?Poor? outcome; 12% had a ?Very Poor? outcome. About 1/3 were employed at follow-up; however, most worked in supported environments. Overall, only having an IQ over 70 made a difference to adult outcome; however, having an IQ in the average to above-average range did not increase the likelihood of having at least a good outcome.
Conclusions: All of the participants in this study had problems associated with the symptoms of autism that persisted into adulthood. Outcome for those with IQs of 70 or more was better. Those with IQs lower than 70 had poorer prognosis. Only a very few were able to live independently and most had impairments in social communication skills that severely affected their outcomes. While more research is needed to more carefully define what aspects of autistic symptoms most severely affect outcome, this study did show that IQ over 70 had some effect. This can help with service planning for children with autism in that it demonstrates an area in which educational interventions should be targeted. The study adds to our knowledge of outcome in autism in demonstrating that people with autism have problems that persist into adulthood and that programming and services must be made available to them.
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