The question of whether an autism diagnosis can be reversed is a complex one that many parents and caregivers of children with autism spectrum disorder (ASD) grapple with. While the term “reversed” might suggest a complete erasure of autism, the reality, as revealed by research, is more nuanced. Studies indicate that some children initially diagnosed with autism do, over time, no longer meet the criteria for an ASD diagnosis. This article delves into what current research tells us about these changes in diagnosis, exploring the factors involved and what it truly means when a child no longer carries an autism label.
Research into the prevalence of autism diagnosis changes reveals a range, suggesting that between 4% and 13% of children initially diagnosed with ASD may later lose that diagnosis. This figure comes from significant U.S. studies that have examined large populations of children. However, it’s crucial to understand that “losing a diagnosis” does not uniformly equate to a complete recovery from all developmental challenges.
Understanding Diagnosis Changes: Insights from Key Studies
Two major studies in the United States have provided valuable insights into the phenomenon of autism diagnosis changes.
The CDC’s ADDM Network Study (2012)
A 2012 study, spearheaded by researchers at the Centers for Disease Control and Prevention (CDC), investigated diagnostic records from the Autism and Developmental Disabilities Monitoring (ADDM) Network. This study, focusing on nearly 1,400 children diagnosed with autism across four states, found that 4% of these children no longer met the criteria for autism by the age of 8.
However, this “loss” of diagnosis was often accompanied by other diagnoses. A significant majority of these children (almost all) received at least one new diagnosis, such as Attention-Deficit Hyperactivity Disorder (ADHD), developmental delay, or language delay. Furthermore, a large portion continued to require special education services in school, indicating ongoing learning and developmental needs.
This study also highlighted an interesting correlation: children diagnosed with autism at or before 30 months of age were more likely to have their diagnosis changed later. This raises questions about whether early intervention played a role in this diagnostic shift or if some of these children were initially misdiagnosed due to the challenges of diagnosing autism in very young children. The researchers themselves acknowledged that their record-review methodology couldn’t definitively answer these questions, emphasizing the difficulty in distinguishing ASD from other developmental conditions in some young children. It’s also important to note this study only tracked children until age 8, meaning diagnostic changes later in childhood weren’t captured.
The National Health Statistics Study (2015)
Another significant study, conducted by researchers at the National Center for Health Statistics, used a different approach. This study involved telephone surveys with over 40,000 parents of children with special healthcare needs. Among them, over 1,500 parents reported their child had received an ASD diagnosis at some point.
This research found that approximately 13% of children who had been diagnosed with autism no longer carried that diagnosis, according to parental reports. These children differed from those who retained their autism diagnosis in several ways. Parents of children who lost the diagnosis reported fewer early concerns regarding their child’s speech, nonverbal communication, learning abilities, and gesturing. This suggests that the initial symptoms in these children might have been less severe from the outset.
Parents offered various reasons for the diagnosis change. A significant portion attributed it to “new information,” suggesting a re-evaluation and refinement of the diagnosis over time. Another group of parents credited successful autism treatments or the child’s natural maturation. Intriguingly, about a quarter of parents in this group believed their child never had autism in the first place but received the diagnosis to access necessary services. This raises the possibility of over-diagnosis of ASD in some cases, particularly by non-specialists. However, the researchers were quick to point out that even if over-diagnosis occurs, it doesn’t account for the overall increase in autism prevalence observed in recent decades.
The Overlap: Autism and ADHD
Both studies highlighted a notable trend: ADHD was a common “replacement” diagnosis for children who no longer had an autism diagnosis. This could be due to several factors. Firstly, some children might experience improvements in their autism symptoms over time, making an ADHD diagnosis more fitting. Secondly, there is a recognized overlap in symptoms between autism and ADHD, particularly in areas of attention and hyperactivity. It’s also possible that in some cases, the initial presentation might have leaned more towards autism in younger children, with ADHD becoming more prominent as they aged and diagnostic evaluations became more refined. Other diagnoses that emerged in place of autism included sensory processing disorder, anxiety, and learning disabilities.
It’s important to remember that these studies relied on parental reports and record reviews, not direct clinical examinations of the children at the time of diagnosis change.
Variability in Research Findings
The range in percentages (from 4% to 13% and even up to 25% in older reviews) regarding autism diagnosis changes underscores the variability in research methodologies. Factors such as the types of participants included in studies, their age ranges, the methods used to confirm diagnoses (or changes thereof), how data is collected, and the very definition of “losing a diagnosis” can all influence the reported rates.
One longitudinal study, following children into young adulthood, found that around 9% no longer met autism criteria by age 19. This number falls within the range found by the larger studies, suggesting a degree of consistency across different research approaches. This particular study emphasized that these individuals had “largely overcome core difficulties associated with ASD” and were participating fully in social interactions.
The Role of Early Diagnosis and Intervention
While the exact reasons behind a diagnosis change can be complex and individual, many experts emphasize the significant impact of early diagnosis and intervention.
Dr. Lisa Wiggins, from the CDC study, points out that “Research tells us the earlier a child with ASD is identified and connected to services, the better.” Her study’s findings support this, showing that children diagnosed with ASD earlier (at 30 months or younger) were more likely to experience a change in diagnosis compared to those diagnosed later.
Early intervention programs are designed to address core autism symptoms and developmental delays through tailored therapies and support. These interventions can lead to significant improvements in communication, social skills, and adaptive behaviors for many children with autism. While intervention may not “reverse” autism in the sense of eliminating the underlying neurological differences, it can help children develop skills and strategies to navigate the world more effectively, potentially leading to a point where they no longer meet diagnostic criteria.
The American Academy of Pediatrics (AAP) recommends regular developmental surveillance for all children, with specific autism screenings at 18 and 24 months. Early detection and prompt access to intervention are crucial steps in supporting children’s development.
Conclusion: Understanding Diagnostic Shifts in Autism
The research on autism diagnosis changes reveals that while a formal autism diagnosis can be altered over time for some children, it’s rarely a simple “reversal.” Instead, it often represents a complex interplay of factors, including:
- Diagnostic refinement: As children develop and are re-evaluated, initial diagnoses may be adjusted to better reflect their developmental profile.
- Symptom improvement: Early intervention and natural maturation can lead to significant progress in core autism symptoms for some individuals.
- Diagnostic overlap: The similarities between autism and other conditions, like ADHD, can lead to diagnostic shifts as a child’s presentation evolves.
- Possible over-diagnosis: In some instances, particularly with non-specialist evaluations, an initial autism diagnosis may not have been entirely accurate.
It is vital to emphasize that losing an autism diagnosis does not diminish the real challenges faced by children and families. Many children who no longer have an autism diagnosis still require support for other developmental or learning needs. Furthermore, the possibility of diagnosis change should not be misinterpreted as a reason to delay or forgo early intervention. Early and intensive intervention remains the most effective approach to support children with autism, regardless of whether their diagnosis changes in the future. Understanding the nuances of diagnosis changes helps provide a more informed and hopeful perspective on the developmental journeys of children diagnosed with autism.
References:
- Helt, M., Kelley, E., Kinsbourne, M., Pandey, J., Boorstein, H., Herbert, M., & Fein, D. (2008). Can children with autism recover? if so, how? Neuropsychology Review, 18(4), 339-366. doi:10.1007/s11065-008-9075-9
- Wiggins, L. D., Baio, J., Schieve, L., Lee, L. C., Nicholas, J., & Rice, C. E. (2012). Retention of autism spectrum diagnoses by community professionals: Findings from the autism and developmental disabilities monitoring network, 2000 and 2006. Journal of Developmental and Behavioral Pediatrics, 33(5), 387-395. doi:10.1097/DBP.0b013e3182560b2f
- Blumberg, S. J., Zablotsky, B., Avila, R. M., Colpe, L. J., Pringle, B. A., & Kogan, M. D. (2015). Diagnosis lost: Differences between children who had and who currently have an autism spectrum disorder diagnosis. Autism: The International Journal of Research and Practice, doi:1362361315607724
- Anderson, D. K., Liang, J. W., & Lord, C. (2014). Predicting young adult outcome among more and less cognitively able individuals with autism spectrum disorders. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 55(5), 485-494. doi:10.1111/jcpp.12178
