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Re: Research: Recovery, Optimal Outcome, & Diagnostic Stabi

Posted: Wed Apr 29, 2015 12:28 pm
by Winnie
Neuropsychiatr Dis Treat. 2015 Apr 7;11:999-1005. doi: 10.2147/NDT.S78707. eCollection 2015.

"Recovery" from the diagnosis of autism - and then?

Olsson MB1, Westerlund J2, Lundström S3, Giacobini M4, Fernell E5, Gillberg C3.


The aim of this study was to follow up the 17 children, from a total group of 208 children with autism spectrum disorder (ASD), who "recovered from autism". They had been clinically diagnosed with ASD at or under the age of 4 years. For 2 years thereafter they received intervention based on applied behavior analysis. These 17 children were all of average or borderline intellectual functioning. On the 2-year follow-up assessment, they no longer met criteria for ASD.


At about 10 years of age they were targeted for a new follow-up. Parents were given a semistructured interview regarding the child's daily functioning, school situation, and need of support, and were interviewed using the Vineland Adaptive Behavior Scales (VABS) and the Autism - Tics, Attention-deficit/hyperactivity disorder (AD/HD), and other Comorbidities (A-TAC) telephone interview.


The vast majority of the children had moderate-to-severe problems with attention/activity regulation, speech and language, behavior, and/or social interaction. A majority of the children had declined in their VABS scores. Most of the 14 children whose parents were A-TAC-interviewed had problems within many behavioral A-TAC domains, and four (29%) had symptom levels corresponding to a clinical diagnosis of ASD, AD/HD, or both. Another seven children (50%) had pronounced subthreshold indicators of ASD, AD/HD, or both.


Children diagnosed at 2-4 years of age as suffering from ASD and who, after appropriate intervention for 2 years, no longer met diagnostic criteria for the disorder, clearly needed to be followed up longer. About 3-4 years later, they still had major problems diagnosable under the umbrella term of ESSENCE (Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations). They continued to be in need of support, educationally, from a neurodevelopmental and a medical point of view. According to parent interview data, a substantial minority of these children again met diagnostic criteria for ASD.

Link to full text:

Re: Research: Recovery, Optimal Outcome, & Diagnostic Stabi

Posted: Sat May 02, 2015 9:47 pm
by Winnie
When an Early Diagnosis of Autism Spectrum Disorder Resolves, What Remains?

Lisa H. Shulman, Erin D'Agostino, Maria D. Valicenti-McDermott, Rosa Seijo, Elizabeth Tulloch, Deborah Meringolo, Nancy Tarshis, Samantha Lee. Pediatrics/CERC, Albert Einstein College of Medicine, Bronx, NY; Children's Hospital at Montefiore, Bronx, NY.

BACKGROUND: It has been documented that some children with early diagnosis of Autism Spectrum Disorder (ASD) do not meet criteria for the diagnosis at a later age. It is unclear, however, if deficits remain after ASD symptomatology resolves.

OBJECTIVE: To characterize residual learning, cognitive, emotional/behavioral diagnoses and educational needs of a group of children with early ASD diagnosis that resolved.

DESIGN/METHODS: Review of 38 children diagnosed with ASD at a University-affiliated inner-city early intervention program 2003-2013 who had follow up evaluation indicating resolution of the original ASD diagnosis. The group represents 7% of the 569 children diagnosed with ASD by the program during this period. Original and follow up diagnoses were made by an experienced multidisciplinary team based on DSM-IV criteria, Childhood Autism Rating Scale(CARS) and/or the Autism Diagnostic Observation Schedule(ADOS). All children had re-evaluation an average of 4 years later. Initial cognitive level was based on the Bayley, and follow up on WPPSI, WISC, or Stanford Binet. Data collected included: demographics, cognitive level, CARS, diagnoses and services originally and at follow up.

RESULTS: Mean age at initial diagnosis 2.6±0.9y and at follow up 6.4±2.8y. 80% male; 44% Hispanic, 36% Caucasian, 10% African American; 46% had Medicaid. Mean initial CARS 32±3 and at follow up 25±4. The initial ADOS (21/38) categorized 29% as autism and 67% ASD and was negative at follow up when available (23/38). On initial cognitive testing (29/38): 33% with intellectual disability, 23% borderline, 44% average. At follow up (33/38): 6% borderline, the rest average. At follow up, 68% had language/learning disability, 49% externalizing problems (Attention Deficit Hyperactivity Disorder, Oppositional Defiant Disorder, Disruptive Behavior Disorder), 24% internalizing problems (mood, anxiety, OCD, selective mutism), 5% significant mental health diagnosis (psychosis.nos), and 8% warranted no diagnoses. 26% were in mainstream academic settings without support and 13% with support, 29% in integrated settings, and 21% in self-contained classes.

CONCLUSIONS: When an early ASD diagnosis resolves, at least in the early years, there are often learning and emotional/behavioral diagnoses that remain. Understanding the full range of possible outcomes is important for parents, clinicians, and the educational system.


Some children lose autism diagnosis but still struggle

Study shows social, cognitive symptoms resolved in 7% of youths with autism spectrum disorder, but they still needed educational services

Carla Kemp, Senior Editor

About one in 14 toddlers diagnosed with autism spectrum disorder (ASD) no longer met the diagnostic criteria in elementary school, but most continued to have emotional/behavior symptoms and required special education supports, according to a study to be presented Sunday, April 26 at the Pediatric Academic Societies (PAS) annual meeting in San Diego.

Previous studies have shown that ASD symptoms resolve in some children over time. It is not clear, however, if these children continue to have cognitive, behavioral or learning deficits.

Researchers, led by developmental pediatrician Lisa Shulman, M.D., reviewed data on 38 children diagnosed with ASD in 2003-’13 whose symptoms had resolved when they were re-evaluated about four years later. The children were among 569 children living in the Bronx who had been diagnosed with ASD by a multidisciplinary team at a university-affiliated early intervention program.

The children came from racially, ethnically and socioeconomically diverse backgrounds, a population generally underrepresented in autism studies. Forty-four percent were Hispanic, 36% were Caucasian, 10% were African-American and 46% were on Medicaid.

Article continues:

Re: Research: Recovery, Optimal Outcome, & Diagnostic Stabi

Posted: Tue Jul 28, 2015 9:59 pm
by Winnie
Questions for Deborah Fein: Defining 'optimal outcome'
Jessica Wright
3 March 2015

One of the hottest topics in autism is the notion that some children outgrow their diagnosis, achieving a distinction dubbed the ‘optimal outcome.’ This small group has captured the imagination of researchers and parents alike, sparking a slew of studies into the factors that might set children on this path.

Deborah Fein, professor of psychology at the University of Connecticut in Storrs, coined the term ‘optimal outcome.’ In a 2013 study, she described 34 people who were diagnosed with autism before age 5 but no longer met the criteria for the disorder years later.

Fein continues to study these individuals, rigorously documenting their remaining symptoms and investigating whether they benefited from certain treatments. We asked Fein what she thinks researchers can glean from optimal outcome studies. When did you first realize that there might be a group of children who improve to such an extent that they lose their autism diagnosis?

Deborah Fein: I have a clinical practice one day a week and we saw some children who started out with clear autism, and a few years later they were looking better and better. There were a few of them who clearly lost features of autism and ended up closer to having attention deficit hyperactivity disorder (ADHD).

I found 11 examples of that phenomenon. We became very interested in this question and pursued these findings in a bigger group. We rigorously studied these children and their social and language functioning to document this phenomenon and to try to find residual problems.

S: What are some of these residual problems?

DF: We dug deep and tried to find social difficulties, but we really didn’t find any. Then we looked for academic problems, and didn’t find any. We looked for problems in executive functioning, which governs mental processes such as problem solving and planning. We didn’t find any.

We did several studies on the pragmatics of language — a child’s ability to use language to convey meaning. These individuals did very well, and the stories they told were well constructed. They did use just a little more idiosyncratic language than the typically developing children, but almost all of the other language variables were equivalent to those of typical children.

We looked at repetitive and restricted behaviors to see if they were still obsessive or insistent on sameness. We found that they like routines around bedtimes and mealtimes — the daily activities. But they have no fixed interests and they’re not obsessional, and they show no repeated movements, such as hand flapping.

We did find some psychiatric conditions in the optimal outcome individuals, in particular ADHD and specific phobias. People with high-functioning autism also had these conditions as well as some tics, some depression and some obsessive-compulsive disorder — smatterings of other things.

S: Do you feel it’s appropriate to say that these children don’t have autism at all, as opposed to just showing marked improvement?

DF: They don’t have autism, as autism is defined by behavior. We had a group of individuals who were below threshold on the Autism Diagnostic Observation Schedule, an in-depth diagnostic test, but still had an autistic flavor to their interactions. We excluded them. The people in the optimal outcome group are off the spectrum by anybody’s definition.

S: Do you think it is possible to predict early on if a certain child will achieve an optimal outcome?

DF: Our evidence is all retrospective because we found the children after they had already recovered. We interviewed parents using the Autism Diagnostic Interview-Revised, and the optimal children were equivalent to high-functioning autism children on communication and repetitive behaviors. But from parent recollection, they were milder in their social impairment when they were little compared with children who didn’t improve as much.

One of the most important findings concerns exposure to interventions: What treatments did the high-functioning autism children get compared with the optimal outcome children? The biggest difference emerged between 2 and 3 years of age based on the proportion of children who got Applied Behavior Analysis (ABA — a one-on-one intervention that breaks down skills into manageable parts).

Between the ages of 2.5 and 3, about 56 percent of the optimal outcome children got ABA compared with 7 percent of the children with high-functioning autism. That’s a huge difference, so I started worrying about where we found these children. For example, if we found all the optimal outcome children through ABA therapists, that would explain why so many of them had had that therapy. But in fact, the high-functioning autism and optimal outcome children were equivalent in terms of where we had found them.

Article continues:

Re: Research: Recovery, Optimal Outcome, & Diagnostic Stability

Posted: Tue Mar 15, 2016 1:02 pm
by Winnie
J Autism Dev Disord. 2016 Feb 19. [Epub ahead of print]

Early Characteristics of Children with ASD Who Demonstrate Optimal Progress Between Age Two and Four.

Moulton E1, Barton M2, Robins DL3,4, Abrams DN5, Fein D2.


Although for many children, Autism Spectrum Disorder (ASD) is a lifelong disability, a subset of children with ASD lose their diagnosis and show typical cognitive and adaptive abilities. The ages at which this transition can occur is not known, but it sometimes occurs quite early. Participants in the current study were 207 children with an ASD at age two who were reevaluated at age four. Eighty-three percent retained an ASD diagnosis at reevaluation and 9 % showed "optimal progress": clear ASD at age two but not at age four, and average cognition, language, communication and social skills at age four. Early child-level factors predicted optimal progress: diagnosis of PDD-NOS, fewer repetitive behaviors, less severe symptomatology and stronger adaptive skills.


ASD; Loss of diagnosis; Optimal outcome


***Edited to add link to full paper (thesis):

Re: Research: Recovery, Optimal Outcome, & Diagnostic Stability

Posted: Thu Mar 17, 2016 4:27 pm
by Winnie
Interesting neuroimaging study regarding Optimal Outcome (indistinguishable from peers, “recovered”) -- speaks to the question of whether the neural function of children with autism who become indistinguishable (OO) becomes neuro-typical (NT) or if it is more similar to ASD (atypical) with unique neural compensation.

Neuroimage Clin. 2016; 10: 182–191.
Published online 2015 Dec 2. doi: 10.1016/j.nicl.2015.11.014

Language comprehension and brain function in individuals with an optimal outcome from autism

Inge-Marie Eigsti,⁎ Michael C. Stevens, Robert T. Schultz, Marianne Barton, Elizabeth Kelley, Letitia Naigles, Alyssa Orinstein, Eva Troyb, and Deborah A. Fein

Although Autism Spectrum Disorder (ASD) is generally a lifelong disability, a minority of individuals with ASD overcome their symptoms to such a degree that they are generally indistinguishable from their typically-developing peers. That is, they have achieved an Optimal Outcome (OO). The question addressed by the current study is whether this normalized behavior reflects normalized brain functioning, or alternatively, the action of compensatory systems. Either possibility is plausible, as most participants with OO received years of intensive therapy that could alter brain networks to align with typical function or work around ASD-related neural dysfunction. Individuals ages 8 to 21 years with high-functioning ASD (n = 23), OO (n = 16), or typical development (TD; n = 20) completed a functional MRI scan while performing a sentence comprehension task. Results indicated similar activations in frontal and temporal regions (left middle frontal, left supramarginal, and right superior temporal gyri) and posterior cingulate in OO and ASD groups, where both differed from the TD group. Furthermore, the OO group showed heightened “compensatory” activation in numerous left- and right-lateralized regions (left precentral/postcentral gyri, right precentral gyrus, left inferior parietal lobule, right supramarginal gyrus, left superior temporal/parahippocampal gyrus, left middle occipital gyrus) and cerebellum, relative to both ASD and TD groups. Behaviorally normalized language abilities in OO individuals appear to utilize atypical brain networks, with increased recruitment of language-specific as well as right homologue and other systems. Early intensive learning and experience may normalize behavioral language performance in OO, but some brain regions involved in language processing may continue to display characteristics that are more similar to ASD than typical development, while others show characteristics not like ASD or typical development.

Continues -- full text of study:

Re: Research: Recovery, Optimal Outcome, & Diagnostic Stability

Posted: Mon Mar 21, 2016 10:33 pm
by Winnie
Prospective study following subjects with ASD from age 2 to 19:

J Child Psychol Psychiatry. 2014 May;55(5):485-94. doi: 10.1111/jcpp.12178. Epub 2013 Dec 9.
Predicting young adult outcome among more and less cognitively able individuals with autism spectrum disorders.
Anderson DK1, Liang JW, Lord C.

The range of outcomes for young adults with Autism Spectrum Disorders (ASD) and the early childhood factors associated with this diversity have implications for clinicians and scientists.

This prospective study provided a unique opportunity to predict outcome 17 years later for a relatively large sample of children diagnosed with ASD at 2 years old. Diagnostic and psychometric instruments were administered between 2 and 19 with data from 2, 3, and 19 included in this study. Clinicians administered tests without knowledge of previous assessments whenever possible. Caregivers provided additional information through questionnaires.

Significant intellectual disabilities at 19 were predicted by age 2 about 85% of the time from VIQ and NVIQ scores together, though prediction of young adult outcome for youths with average or higher intelligence was more complex. By 19, 9% of participants had largely overcome core difficulties associated with ASD and no longer retained a diagnosis. These youths with Very Positive Outcomes were more likely to have participated in treatment and had a greater reduction in repetitive behaviors between age 2 and 3 compared to other Cognitively Able youths (VIQ ≥70) with ASD. Very Positive Outcome youths did not differ phenotypically from Cognitively Able ASD individuals at 2 but both groups differed from Cognitively Less Able individuals (VIQ <70).

Those most at risk for intellectual disabilities and ASD can be reliably identified at an early age to receive comprehensive treatment. Findings also suggest that some cognitively able children with ASD who participate in early intervention have very positive outcomes, although replication with randomized, larger samples is needed. In order to improve understanding of very positive outcomes in ASD, future research will need to identify how variations in child characteristics and environmental factors contribute to the nature and timing of growth across individuals and areas of development.

***Full text of study is not open access but these links have additional details and commentary regarding the study:


Related studies – same study subjects:

Journal of Consulting and Clinical Psychology Copyright 2007 by the American Psychological Association
2007, Vol. 75, No. 4, 594–604
Patterns of Growth in Verbal Abilities Among Children With Autism Spectrum Disorder

Verbal skills were assessed at approximately ages 2, 3, 5, and 9 years for 206 children with a clinical
diagnosis of autism (n 98), pervasive developmental disorders-not otherwise specified (PDD-NOS;
n 58), or nonspectrum developmental disabilities (n 50). Growth curve analyses were used to
analyze verbal skills trajectories over time. Nonverbal IQ and joint attention emerged as strong positive
predictors of verbal outcome. The gap between the autism and other 2 groups widened with time as the
latter improved at a higher rate. However, there was considerable variability within diagnostic groups.
Children with autism most at risk for more serious language impairments later in life can be identified
with considerable accuracy at a very young age, while improvement can range from minimal to dramatic.

Full text of study:


Am J Intellect Dev Disabil. 2011 Sep; 116(5): 381–397.
Changes in Maladaptive Behaviors from Mid-Childhood to Young Adulthood in Autism Spectrum Disorder
Deborah K. Anderson, Melissa P. Maye, and Catherine Lord

The current study prospectively examined trajectories of change in symptoms of irritability, hyperactivity, and social withdrawal, as well as predictors of such behaviors from age 9 to 18 for youths with autism spectrum disorder (ASD) and a comparison group with nonspectrum developmental delays. Children with more severe core features of autism had consistently higher irritability and hyperactivity scores over time than those with broader ASD and nonspectrum delays. Across all diagnoses, behaviors related to hyperactivity showed the greatest improvement. Social withdrawal worsened with age for a substantial proportion of youths with ASD but not for the nonspectrum comparison group. Compared with nonspectrum youths, children with ASD showed greater heterogeneity in trajectories for maladaptive behaviors.

Full text of study:

Re: Research: Recovery, Optimal Outcome, & Diagnostic Stability

Posted: Mon Sep 26, 2016 10:29 pm
by Winnie
"Recovery" by the Numbers: How often do children lose an autism diagnosis?

Marina Sarrs
Interactive Autism Network at Kennedy Krieger Institute

January 27, 2016

[. . .]

An often-cited 2008 review of research studies found that from 3 to 25 percent of people eventually lose their autism diagnosis,1 a wide margin. Some of those studies involved relatively small groups of children (10 to 50, for example). What happens if you cast a wider net, and looked at larger, nationwide studies?

Two major U.S. studies have found that 4 to 13 percent of children lose their autism spectrum disorder (ASD) diagnosis, but that doesn't always mean a complete "recovery" from developmental problems.

A 2012 study, led by a government epidemiologist, found that 4 percent of children lost their diagnosis by age 8.2 For that study, researchers examined the records of almost 1,400 children who had been diagnosed with autism in four states – Arizona, Georgia, Maryland, and South Carolina – that are part of the U.S. Autism and Developmental Disabilities Monitoring (ADDM) Network. This is believed to be the first population-based study of factors associated with a lost autism diagnosis.

Replacing ASD Diagnosis with Another One

Sixty-one children lost their autism spectrum diagnosis by age 8. But almost all of them had at least one other diagnosis, such as Attention-Deficit Hyperactivity Disorder (ADHD), developmental delay, or language delay. Fifty of the 61 children were receiving special education help at school, which suggests ongoing academic challenges.

Full article:

Road to "Recovery": What Does it Mean to Lose an Autism Diagnosis?

Marina Sarrs
Interactive Autism Network at Kennedy Krieger Institute

Date Published: January 27, 2016

Such a simple gesture: waving good-bye. Toddlers see their parents do it, and repeat it. But children with autism don't instinctively imitate other people, not usually. Jake Exkorn was one such toddler. In a home video, Jake is being taught to wave bye-bye by an autism therapist; she grabs his arm and waves it for him, again and again. He seems wooden, remote.1, 2

Then, fast forward about 15 years, there's Jake as a young adult, being recorded by another video camera. This time, he smiles easily, warmly. "When I see the [old] videos it amazes me that at one point in my life, I had autism, and it makes me realize how fortunate I am to recover," he says.2 Jake is among a minority of people who "lose" their autism diagnosis. He doesn't have many memories of having autism, just those videos.

Nothing inspires more interest, debate, and even concern, than the idea that someone could "recover" from a brain-based condition like autism. The notion fuels an industry that offers treatments, both proven and dubious; triggers both hope and sadness; and fuels political and academic controversy. Is recovery real, and is it good?

Studies have estimated that from 3 percent to 25 percent of children with autism lose their diagnosis.3 Some have wondered: did those who recover really have autism at the outset? Did they lose their diagnosis but still have autistic symptoms, even subtle ones?

Full article:

Re: Research: Recovery, Optimal Outcome, & Diagnostic Stability

Posted: Mon Feb 06, 2017 10:00 pm
by Winnie
Neuroimage Clin. 2016; 11: 566–577.

Published online 2016 Apr 6.

Maturation of auditory neural processes in autism spectrum disorder — A longitudinal MEG study

Russell G. Port,a J. Christopher Edgar,a Matthew Ku,a Luke Bloy,a Rebecca Murray,a Lisa Blaskey,a Susan E. Levy,b and Timothy P.L. Robertsa,⁎


Individuals with autism spectrum disorder (ASD) show atypical brain activity, perhaps due to delayed maturation. Previous studies examining the maturation of auditory electrophysiological activity have been limited due to their use of cross-sectional designs. The present study took a first step in examining magnetoencephalography (MEG) evidence of abnormal auditory response maturation in ASD via the use of a longitudinal design.

Initially recruited for a previous study, 27 children with ASD and nine typically developing (TD) children, aged 6- to 11-years-old, were re-recruited two to five years later. At both timepoints, MEG data were obtained while participants passively listened to sinusoidal pure-tones. Bilateral primary/secondary auditory cortex time domain (100 ms evoked response latency (M100)) and spectrotemporal measures (gamma-band power and inter-trial coherence (ITC)) were examined. MEG measures were also qualitatively examined for five children who exhibited “optimal outcome”, participants who were initially on spectrum, but no longer met diagnostic criteria at follow-up.

M100 latencies were delayed in ASD versus TD at the initial exam (~ 19 ms) and at follow-up (~ 18 ms). At both exams, M100 latencies were associated with clinical ASD severity. In addition, gamma-band evoked power and ITC were reduced in ASD versus TD. M100 latency and gamma-band maturation rates did not differ between ASD and TD. Of note, the cohort of five children that demonstrated “optimal outcome” additionally exhibited M100 latency and gamma-band activity mean values in-between TD and ASD at both timepoints. Though justifying only qualitative interpretation, these “optimal outcome” related data are presented here to motivate future studies.

Children with ASD showed perturbed auditory cortex neural activity, as evidenced by M100 latency delays as well as reduced transient gamma-band activity. Despite evidence for maturation of these responses in ASD, the neural abnormalities in ASD persisted across time. Of note, data from the five children whom demonstrated “optimal outcome” qualitatively suggest that such clinical improvements may be associated with auditory brain responses intermediate between TD and ASD. These “optimal outcome” related results are not statistically significant though, likely due to the low sample size of this cohort, and to be expected as a result of the relatively low proportion of “optimal outcome” in the ASD population. Thus, further investigations with larger cohorts are needed to determine if the above auditory response phenotypes have prognostic utility, predictive of clinical outcome.

Full text:

Re: Research: Recovery, Optimal Outcome, & Diagnostic Stability

Posted: Mon Feb 06, 2017 10:04 pm
by Winnie
Pediatr Int. 2016 Nov 12.

What happens to children who move off the autism spectrum? Clinical follow-up study.
Mukaddes NM1, Mutluer T2, Ayik B3, Umut A1.


There is controversial information on outcome of school age individuals who lose the diagnosis of autism and achieve "optimal outcome" (OO). The present study assessed the autism symptoms and other psychiatric disorders in a group of children with a past history of autism.

The subjects consisted of 26 individuals who had lost the diagnosis of autism 2-8 years previously. Clinical assessment was done with both parents and children. Diagnostic and Statistical Manual of Mental Disorders (5th edn; DSM-V) criteria were used for diagnosis of autism spectrum disorder (ASD). In addition, Childhood Autism Rating Scale and Social Communication Questionnaire (current version) were used. Psychiatric disorders were assessed using the Kiddie Schedule for Affective Disorders and Schizophrenia for School-Age Children Present and Lifetime Version (K-SADS-PL).

None of the participants met the criteria for ASD. Ninety-two percent had a lifetime diagnosis and 81% had a present psychiatric disorder based on the K-SADS. Attention-deficit hyperactivity disorder, specific phobia and obsessive-compulsive disorder were the most common disorders.

Improved status with regard to autism symptomatology is maintained over time, but these individuals are vulnerable to developing other psychiatric disorders. It is crucial to maintain psychiatric follow up of children who move off the autism spectrum.