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The potential for high-functioning autistic children to lose both their autism spectrum disorder diagnosis and to achieve typical, nonautistic social and communication functioning was demonstrated in a recent study in the Journal of Child Psychology and Psychiatry.
The participants initially met criteria for an autism spectrum disorder (ASD) diagnosis, but they have since lost all ASD symptoms and diagnosis based on clinical judgment and on assessments in social cognition (face recognition), language, and social interaction as measured on the Vineland Adaptive Behavior Scales (VABS) and the Autism Diagnostic Observation Schedule (ADOS).
The small study, involving 34 formerly ASD children who achieved "optimal outcomes" (OO) and their matched cohorts, includes a number of limitations and was conducted largely to "demonstrate the existence" of a group that clearly had autism previously and now no longer does, reported Dr. Deborah Fein of the University of Connecticut, Storrs, and her associates (J. Child Psychol. Psychiatry 2013;54:195-205).
The researchers matched the OO participants by gender, age, and nonverbal IQ to 44 high-functioning autism (HFA) participants and 34 typically developing (TD) participants. OO participant eligibility required a documented ASD diagnosis before age 5 years, which was confirmed independently with a study coinvestigator using only behavior notes in the child’s records. Additionally, OO participants had to have typically developing friends, could not currently meet the criteria for any ASD diagnosis (also independently confirmed), needed at least a 77 on the communication and socialization domains of the VABS, and could not be receiving any special education services related to autism.
Children in the HFA group had to meet ASD criteria clinically and with the ADOS. Children in the TD group could not have ever met criteria for ASD (by parent report) or have a first-degree relative with ASD, and had to have at least a 77 on the communication and socialization VABS domains. All group participants were excluded if they had a debilitating active psychotic disorder, severe visual or hearing impairments, a seizure disorder, fragile X syndrome, or any significant head trauma.
During approximately 6-hour testing sessions, the study participants underwent assessments using the ADOS, the VABS, the Benton Facial Recognition Test, the Clinical Evaluation of Language Fundamentals-IV, the Wechsler Abbreviated Scale of Intelligence for verbal and nonverbal IQ, and the Edinburgh Handedness Inventory. The latter test was used because "left-handedness or delayed maturation of handedness is overrepresented in autism." Parent interviews were used to establish the severity of the children’s initial ASD diagnosis, using the Autism Diagnostic Interview-Revised (ADI-R), and all parents were interviewed using the Social Communication-Questionnaire (SCQ).
No OO or TD participants met ASD diagnostic criteria currently. Although seven OO participants showed some mild social impairment, it was determined to be nonautistic and related to anxiety, depression, embarrassment, inattention, or related issues. TD and OO participants had nearly identical and high average verbal IQ scores, which were an average 7 points higher than the HFA verbal IQ scores. The HFA group was below average on the facial recognition scores; in the OO and TD groups, facial recognitions scores were average and similar.
On the ADOS communication items, 21 TD and 20 OO participants had straight zeroes, which indicates most typically functioning; none of the HFA participants scored straight zeros on these items. Also, 22 TD and 16 OO participants had straight zeroes on the ADOS social items, but none of the HFA participants did. Scores on the VABS communication (OO, 98.30; TD, 93.44), socialization (OO, 102.03; TD, 101.74), and daily living (OO, 92.30; TD, 88.76) scales were similar between OO and TD groups. The HFA group’s mean scores were significantly lower in the same domains (82.70, 75.51, and 75.40, respectively).
Although the OO participants had shown less impaired lifetime socialization scores on the ADI-R than the HFA group (15.24, compared with 20.30; P less than .001), the two groups’ communication (OO, 14.30; HFA, 15.51) and repetitive behaviors (OO, 5.85; HFA, 6.19) scores were similar. Yet the OO participants’ autism symptoms were, on average, a bit milder than those of the HFA group, according to comparisons of parent reports. Indeed, the OO individuals’ milder childhood autism is one limitation of the study, and the seemingly similar reports of communication and repetitive behaviors between the OO and HFA individuals could be biased by parent report.
Dr. Fein and her associates concluded their "results clearly demonstrate the existence of a group of individuals with an early history of ASD, who no longer meet criteria for any ASD, and whose communication and socialization skills ... are on par with that of TD individuals."
They noted, however, that there may be "subtle residual deficits" among the OO participants that the assessments did not detect, and they are analyzing further results of cognitive ability, language, academics, and executive function testing for later reporting.
Dr. Fein and her associates also noted that analyzing peer interaction and the quality of friendships would more conclusively establish evidence of normal social functioning in the OO group.
The surprisingly higher average IQ scores among the OO individuals also points to the possibility that "above average cognition allowed individuals with ASD to compensate for some of their deficits" or that there was a higher study volunteerism rate among families with higher-IQ children, they said. Further, OO participants were screened to specifically include scores in "the normal range on specific cognitive and adaptive measures," reducing likely differences between the OO and TD children.
The study’s applicability also has significant limitations. The researchers cannot address the question of how many children with ASD can necessarily reach these outcomes, which would require a prospective, longitudinal study. The study also does not offer insights into which interventions – if any – might more likely produce an optimal outcome, which itself was narrowly defined in this study. It’s also unclear whether the optimal outcomes result from compensatory functioning or from actual changes in brain structure and function, Dr. Fein and her associates said.
The researchers also mentioned a lack of diversity in their study, which enrolled mainly children in the northeastern United States and largely white participants. They theorized that OO may be rare in children from minority groups or families with lower socioeconomic status because of lack of optimal interventions or resources.
Other "crucial questions" remain related to the "biology of remediable autism, the course of improvement, and the necessary and sufficient conditions, including treatment, for such improvement," they said.
The study was funded by the National Institutes of Health. The authors said that they had no relevant disclosures.
This is an important paper that, like all others, needs replication, and there is reasonably strong evidence that early detection and intervention have led, on balance, to significant improvements in outcome, said Dr. Fred Volkmar.
There are, however, complexities associated with understanding the word "cure." It is important to realize that a range of outcomes is possible, and we sometimes don’t have a good sense until adolescence of how well a person will do. Sadly, even with good programs and for reasons we don’t understand, the degree of improvement is not what we want.
Yet lesser improvement should not be regarded as "failure," noted Dr. Sally Ozonoff.
Researchers have generally avoided the word "recovery," as Dr. Fein and her associates do in this study, to avoid creating false hopes, sounding like marketing materials for treatments, or implying any other outcome than an optimal one is a failure. Yet, while recovery won’t be possible for everyone or the only outcome worth fighting for, this study does provide reason to talk seriously about the possibility of "recovery" as long as it does not detract attention from those who achieve smaller gains.
Meanwhile, other optimal outcomes, as A.A. Broderick has noted, can also "include emergence from isolation into engagement with the world and full participation in an ordinary life, even while retaining significant symptoms," Dr. Ozonoff wrote.
Dr. Volkmar is chief of child psychiatry at Yale-New Haven Hospital and director of the Child Study Center at Yale University. He made these comments in an interview. Dr. Ozonoff, joint editor of the Journal of Child Psychology and Psychiatry, is a professor specializing in autism research in the department of psychiatry and behavioral sciences at the University of California, Davis. Her comments appeared in a commentary published with the study (J. Child Psychol. Psychiatry 2013;54:113-4).
This is an important paper that, like all others, needs replication, and there is reasonably strong evidence that early detection and intervention have led, on balance, to significant improvements in outcome, said Dr. Fred Volkmar.
There are, however, complexities associated with understanding the word "cure." It is important to realize that a range of outcomes is possible, and we sometimes don’t have a good sense until adolescence of how well a person will do. Sadly, even with good programs and for reasons we don’t understand, the degree of improvement is not what we want.
Yet lesser improvement should not be regarded as "failure," noted Dr. Sally Ozonoff.
Researchers have generally avoided the word "recovery," as Dr. Fein and her associates do in this study, to avoid creating false hopes, sounding like marketing materials for treatments, or implying any other outcome than an optimal one is a failure. Yet, while recovery won’t be possible for everyone or the only outcome worth fighting for, this study does provide reason to talk seriously about the possibility of "recovery" as long as it does not detract attention from those who achieve smaller gains.
Meanwhile, other optimal outcomes, as A.A. Broderick has noted, can also "include emergence from isolation into engagement with the world and full participation in an ordinary life, even while retaining significant symptoms," Dr. Ozonoff wrote.
Dr. Volkmar is chief of child psychiatry at Yale-New Haven Hospital and director of the Child Study Center at Yale University. He made these comments in an interview. Dr. Ozonoff, joint editor of the Journal of Child Psychology and Psychiatry, is a professor specializing in autism research in the department of psychiatry and behavioral sciences at the University of California, Davis. Her comments appeared in a commentary published with the study (J. Child Psychol. Psychiatry 2013;54:113-4).
This is an important paper that, like all others, needs replication, and there is reasonably strong evidence that early detection and intervention have led, on balance, to significant improvements in outcome, said Dr. Fred Volkmar.
There are, however, complexities associated with understanding the word "cure." It is important to realize that a range of outcomes is possible, and we sometimes don’t have a good sense until adolescence of how well a person will do. Sadly, even with good programs and for reasons we don’t understand, the degree of improvement is not what we want.
Yet lesser improvement should not be regarded as "failure," noted Dr. Sally Ozonoff.
Researchers have generally avoided the word "recovery," as Dr. Fein and her associates do in this study, to avoid creating false hopes, sounding like marketing materials for treatments, or implying any other outcome than an optimal one is a failure. Yet, while recovery won’t be possible for everyone or the only outcome worth fighting for, this study does provide reason to talk seriously about the possibility of "recovery" as long as it does not detract attention from those who achieve smaller gains.
Meanwhile, other optimal outcomes, as A.A. Broderick has noted, can also "include emergence from isolation into engagement with the world and full participation in an ordinary life, even while retaining significant symptoms," Dr. Ozonoff wrote.
Dr. Volkmar is chief of child psychiatry at Yale-New Haven Hospital and director of the Child Study Center at Yale University. He made these comments in an interview. Dr. Ozonoff, joint editor of the Journal of Child Psychology and Psychiatry, is a professor specializing in autism research in the department of psychiatry and behavioral sciences at the University of California, Davis. Her comments appeared in a commentary published with the study (J. Child Psychol. Psychiatry 2013;54:113-4).
The potential for high-functioning autistic children to lose both their autism spectrum disorder diagnosis and to achieve typical, nonautistic social and communication functioning was demonstrated in a recent study in the Journal of Child Psychology and Psychiatry.
The participants initially met criteria for an autism spectrum disorder (ASD) diagnosis, but they have since lost all ASD symptoms and diagnosis based on clinical judgment and on assessments in social cognition (face recognition), language, and social interaction as measured on the Vineland Adaptive Behavior Scales (VABS) and the Autism Diagnostic Observation Schedule (ADOS).
The small study, involving 34 formerly ASD children who achieved "optimal outcomes" (OO) and their matched cohorts, includes a number of limitations and was conducted largely to "demonstrate the existence" of a group that clearly had autism previously and now no longer does, reported Dr. Deborah Fein of the University of Connecticut, Storrs, and her associates (J. Child Psychol. Psychiatry 2013;54:195-205).
The researchers matched the OO participants by gender, age, and nonverbal IQ to 44 high-functioning autism (HFA) participants and 34 typically developing (TD) participants. OO participant eligibility required a documented ASD diagnosis before age 5 years, which was confirmed independently with a study coinvestigator using only behavior notes in the child’s records. Additionally, OO participants had to have typically developing friends, could not currently meet the criteria for any ASD diagnosis (also independently confirmed), needed at least a 77 on the communication and socialization domains of the VABS, and could not be receiving any special education services related to autism.
Children in the HFA group had to meet ASD criteria clinically and with the ADOS. Children in the TD group could not have ever met criteria for ASD (by parent report) or have a first-degree relative with ASD, and had to have at least a 77 on the communication and socialization VABS domains. All group participants were excluded if they had a debilitating active psychotic disorder, severe visual or hearing impairments, a seizure disorder, fragile X syndrome, or any significant head trauma.
During approximately 6-hour testing sessions, the study participants underwent assessments using the ADOS, the VABS, the Benton Facial Recognition Test, the Clinical Evaluation of Language Fundamentals-IV, the Wechsler Abbreviated Scale of Intelligence for verbal and nonverbal IQ, and the Edinburgh Handedness Inventory. The latter test was used because "left-handedness or delayed maturation of handedness is overrepresented in autism." Parent interviews were used to establish the severity of the children’s initial ASD diagnosis, using the Autism Diagnostic Interview-Revised (ADI-R), and all parents were interviewed using the Social Communication-Questionnaire (SCQ).
No OO or TD participants met ASD diagnostic criteria currently. Although seven OO participants showed some mild social impairment, it was determined to be nonautistic and related to anxiety, depression, embarrassment, inattention, or related issues. TD and OO participants had nearly identical and high average verbal IQ scores, which were an average 7 points higher than the HFA verbal IQ scores. The HFA group was below average on the facial recognition scores; in the OO and TD groups, facial recognitions scores were average and similar.
On the ADOS communication items, 21 TD and 20 OO participants had straight zeroes, which indicates most typically functioning; none of the HFA participants scored straight zeros on these items. Also, 22 TD and 16 OO participants had straight zeroes on the ADOS social items, but none of the HFA participants did. Scores on the VABS communication (OO, 98.30; TD, 93.44), socialization (OO, 102.03; TD, 101.74), and daily living (OO, 92.30; TD, 88.76) scales were similar between OO and TD groups. The HFA group’s mean scores were significantly lower in the same domains (82.70, 75.51, and 75.40, respectively).
Although the OO participants had shown less impaired lifetime socialization scores on the ADI-R than the HFA group (15.24, compared with 20.30; P less than .001), the two groups’ communication (OO, 14.30; HFA, 15.51) and repetitive behaviors (OO, 5.85; HFA, 6.19) scores were similar. Yet the OO participants’ autism symptoms were, on average, a bit milder than those of the HFA group, according to comparisons of parent reports. Indeed, the OO individuals’ milder childhood autism is one limitation of the study, and the seemingly similar reports of communication and repetitive behaviors between the OO and HFA individuals could be biased by parent report.
Dr. Fein and her associates concluded their "results clearly demonstrate the existence of a group of individuals with an early history of ASD, who no longer meet criteria for any ASD, and whose communication and socialization skills ... are on par with that of TD individuals."
They noted, however, that there may be "subtle residual deficits" among the OO participants that the assessments did not detect, and they are analyzing further results of cognitive ability, language, academics, and executive function testing for later reporting.
Dr. Fein and her associates also noted that analyzing peer interaction and the quality of friendships would more conclusively establish evidence of normal social functioning in the OO group.
The surprisingly higher average IQ scores among the OO individuals also points to the possibility that "above average cognition allowed individuals with ASD to compensate for some of their deficits" or that there was a higher study volunteerism rate among families with higher-IQ children, they said. Further, OO participants were screened to specifically include scores in "the normal range on specific cognitive and adaptive measures," reducing likely differences between the OO and TD children.
The study’s applicability also has significant limitations. The researchers cannot address the question of how many children with ASD can necessarily reach these outcomes, which would require a prospective, longitudinal study. The study also does not offer insights into which interventions – if any – might more likely produce an optimal outcome, which itself was narrowly defined in this study. It’s also unclear whether the optimal outcomes result from compensatory functioning or from actual changes in brain structure and function, Dr. Fein and her associates said.
The researchers also mentioned a lack of diversity in their study, which enrolled mainly children in the northeastern United States and largely white participants. They theorized that OO may be rare in children from minority groups or families with lower socioeconomic status because of lack of optimal interventions or resources.
Other "crucial questions" remain related to the "biology of remediable autism, the course of improvement, and the necessary and sufficient conditions, including treatment, for such improvement," they said.
The study was funded by the National Institutes of Health. The authors said that they had no relevant disclosures.
The potential for high-functioning autistic children to lose both their autism spectrum disorder diagnosis and to achieve typical, nonautistic social and communication functioning was demonstrated in a recent study in the Journal of Child Psychology and Psychiatry.
The participants initially met criteria for an autism spectrum disorder (ASD) diagnosis, but they have since lost all ASD symptoms and diagnosis based on clinical judgment and on assessments in social cognition (face recognition), language, and social interaction as measured on the Vineland Adaptive Behavior Scales (VABS) and the Autism Diagnostic Observation Schedule (ADOS).
The small study, involving 34 formerly ASD children who achieved "optimal outcomes" (OO) and their matched cohorts, includes a number of limitations and was conducted largely to "demonstrate the existence" of a group that clearly had autism previously and now no longer does, reported Dr. Deborah Fein of the University of Connecticut, Storrs, and her associates (J. Child Psychol. Psychiatry 2013;54:195-205).
The researchers matched the OO participants by gender, age, and nonverbal IQ to 44 high-functioning autism (HFA) participants and 34 typically developing (TD) participants. OO participant eligibility required a documented ASD diagnosis before age 5 years, which was confirmed independently with a study coinvestigator using only behavior notes in the child’s records. Additionally, OO participants had to have typically developing friends, could not currently meet the criteria for any ASD diagnosis (also independently confirmed), needed at least a 77 on the communication and socialization domains of the VABS, and could not be receiving any special education services related to autism.
Children in the HFA group had to meet ASD criteria clinically and with the ADOS. Children in the TD group could not have ever met criteria for ASD (by parent report) or have a first-degree relative with ASD, and had to have at least a 77 on the communication and socialization VABS domains. All group participants were excluded if they had a debilitating active psychotic disorder, severe visual or hearing impairments, a seizure disorder, fragile X syndrome, or any significant head trauma.
During approximately 6-hour testing sessions, the study participants underwent assessments using the ADOS, the VABS, the Benton Facial Recognition Test, the Clinical Evaluation of Language Fundamentals-IV, the Wechsler Abbreviated Scale of Intelligence for verbal and nonverbal IQ, and the Edinburgh Handedness Inventory. The latter test was used because "left-handedness or delayed maturation of handedness is overrepresented in autism." Parent interviews were used to establish the severity of the children’s initial ASD diagnosis, using the Autism Diagnostic Interview-Revised (ADI-R), and all parents were interviewed using the Social Communication-Questionnaire (SCQ).
No OO or TD participants met ASD diagnostic criteria currently. Although seven OO participants showed some mild social impairment, it was determined to be nonautistic and related to anxiety, depression, embarrassment, inattention, or related issues. TD and OO participants had nearly identical and high average verbal IQ scores, which were an average 7 points higher than the HFA verbal IQ scores. The HFA group was below average on the facial recognition scores; in the OO and TD groups, facial recognitions scores were average and similar.
On the ADOS communication items, 21 TD and 20 OO participants had straight zeroes, which indicates most typically functioning; none of the HFA participants scored straight zeros on these items. Also, 22 TD and 16 OO participants had straight zeroes on the ADOS social items, but none of the HFA participants did. Scores on the VABS communication (OO, 98.30; TD, 93.44), socialization (OO, 102.03; TD, 101.74), and daily living (OO, 92.30; TD, 88.76) scales were similar between OO and TD groups. The HFA group’s mean scores were significantly lower in the same domains (82.70, 75.51, and 75.40, respectively).
Although the OO participants had shown less impaired lifetime socialization scores on the ADI-R than the HFA group (15.24, compared with 20.30; P less than .001), the two groups’ communication (OO, 14.30; HFA, 15.51) and repetitive behaviors (OO, 5.85; HFA, 6.19) scores were similar. Yet the OO participants’ autism symptoms were, on average, a bit milder than those of the HFA group, according to comparisons of parent reports. Indeed, the OO individuals’ milder childhood autism is one limitation of the study, and the seemingly similar reports of communication and repetitive behaviors between the OO and HFA individuals could be biased by parent report.
Dr. Fein and her associates concluded their "results clearly demonstrate the existence of a group of individuals with an early history of ASD, who no longer meet criteria for any ASD, and whose communication and socialization skills ... are on par with that of TD individuals."
They noted, however, that there may be "subtle residual deficits" among the OO participants that the assessments did not detect, and they are analyzing further results of cognitive ability, language, academics, and executive function testing for later reporting.
Dr. Fein and her associates also noted that analyzing peer interaction and the quality of friendships would more conclusively establish evidence of normal social functioning in the OO group.
The surprisingly higher average IQ scores among the OO individuals also points to the possibility that "above average cognition allowed individuals with ASD to compensate for some of their deficits" or that there was a higher study volunteerism rate among families with higher-IQ children, they said. Further, OO participants were screened to specifically include scores in "the normal range on specific cognitive and adaptive measures," reducing likely differences between the OO and TD children.
The study’s applicability also has significant limitations. The researchers cannot address the question of how many children with ASD can necessarily reach these outcomes, which would require a prospective, longitudinal study. The study also does not offer insights into which interventions – if any – might more likely produce an optimal outcome, which itself was narrowly defined in this study. It’s also unclear whether the optimal outcomes result from compensatory functioning or from actual changes in brain structure and function, Dr. Fein and her associates said.
The researchers also mentioned a lack of diversity in their study, which enrolled mainly children in the northeastern United States and largely white participants. They theorized that OO may be rare in children from minority groups or families with lower socioeconomic status because of lack of optimal interventions or resources.
Other "crucial questions" remain related to the "biology of remediable autism, the course of improvement, and the necessary and sufficient conditions, including treatment, for such improvement," they said.
The study was funded by the National Institutes of Health. The authors said that they had no relevant disclosures.
FROM THE JOURNAL OF CHILD PSYCHOLOGY AND PSYCHIATRY
Major Finding: The ability of children with autism spectrum disorder to lose their diagnosis and their autistic symptoms and achieve performance in the typical development range for verbal IQ, communication skills, and social functioning has been shown to be possible and to be one "optimal outcome" for children with ASD.
Data Source: A battery of social, communication, IQ, and related functioning assessments of 34 "optimal outcome" (formerly ASD) participants, 44 high-functioning autism participants, and 34 typically developing participants, all matched by gender, age, and nonverbal IQ.
Disclosures: The study was funded by the National Institutes of Health. The authors said that they had no relevant disclosures.
