Can Kids Lose Their Autism Diagnosis?

A very sensitive question has emerged over whether it’s possible for a person on the autism spectrum to “lose an autism diagnosis” or “recover.” Recent results from a respected scientific study led by Deborah Fein, PhD, support “the existence of a group of individuals with an early history of Autism Spectrum Disorders (ASD) who no longer meet criteria for any ASD.” That study emphasizes that the results apply to only a small percentage of individuals and that these individuals may still have subtle residual deficits and/or non-autism conditions like anxiety, depression and impulsivity.

What do regional experts think about such research, and what inferences can we draw for the future about this topic that is loaded with emotion, nuance and fuel for further research?

Continuum of neurodiversity

Autism is a behavior spectrum disorder, with diagnosis based on observed and reported behaviors, according to Caroline Eggerding, MD, a developmental pediatrician and chief of the Pediatric Neurology and Development Division at Cooper University Health Care in Camden, NJ. No specific medical test or genetic marker currently diagnoses or predicts autism.

This behavioral diagnosis includes a broad range of social communications issues and restricted, rigid and/or repeated rituals and sensory-related needs. “It’s a heterogeneous population,” says Dr. Eggerding.

The autism spectrum resembles a continuum, as the late doctors Hans Asperger and Lorna Wing called it, where there’s no clear yes-no, on-off distinction. Individuals at one end of the continuum generally have more severe symptoms, and those at the other end have fewer and milder signs.

Autism “overlaps with learning disabilities and shades into eccentric normality,” according to the late Dr. Wing, psychiatrist and mother of a child with autism. Wing’s 2014 obituary includes her early observation, “Nature never draws a line without smudging it. You cannot separate into those ‘with’ and ‘without’ traits. They are so scattered.”

Part of an explanation for the (estimated 10) percent who are said to have lost their ASD diagnosis could be that they were already toward the milder end of the spectrum, and early interventions and other unknown factors may have moved their diagnostic scores just beyond the threshold for inclusion in the autistic category.

Support needed, not a cure

Everybody has strengths and weaknesses, gifts and challenges, the experts remind us. Aside from identifying the category that best fits a child, it’s helpful to focus on how to build the needed skills and embrace and support the wide variation of human neurodiversity.

“People can have a great adult life with autism, but having no autism symptoms does not guarantee an easy adulthood,” notes Judith Miller, PhD, clinical training director at the Center for Autism Research at Children’s Hospital of Philadelphia. Some individuals without ASDs still require certain support services throughout their lives. That support might include continued research, therapy for conditions like anxiety or depression and wider awareness of and accommodations for manifestations of neurodiversity.

Some people on the autism spectrum lead rich, accomplished lives and even reject the notion of a cure because they believe autism is an integral part of their identity, creativity and perspective. They want acceptance and reasonable adjustments that support their needs.

However, Dr. Miller notes that most people with autism are “really struggling” and need developmentally appropriate interventions, intensive skill building, accommodation and research on their behalf.

Causes, outcomes and fixes

Specialists now talk about autisms in the plural, suggesting that, like cancer, autism is a broad term for many different conditions and etiologies.

Complex genetic predispositions and triggers are associated with autism, according to Dr. Eggerding, but no causal relationships have been established.

Dr. Eggerding has concerns that a desperate search for a cause and cure often leaves families “vulnerable to the next false claim.” She encourages families to work with interventions proven to be effective and recommends resources like the Autism New Jersey website, which has green, yellow and red light categories for known, uncertain and risky options for treatments.

Dr. Miller explains that when we seek to improve and optimize outcomes for individuals with ASDs, we must under- stand specifically what it is we’re trying to treat and identify the end goal. Symptoms like hand flapping, for example, may be an acceptable sign of excitement or may be extremely impairing and disruptive. Where and when do we respect a child’s idiosyncrasies, and when do they constitute disorders that require interventions, for instance, to improve speech and language? Additional conditions that also may need intervention, like seizures or aggression, may co-occur with autism but aren’t actually part of the autism itself. Dr. Miller asks us to be clear on whether we are “trying to change the kid or improve his function.”

The future holds promise. Dr. Miller points to more targeted, individualized interventions and medicines, research and increasing opportunities for young adults with autism. But experts caution families not to let the notion of losing a label prevent them from seeking the range of services they need.

Dr. Miller also reminds families that even if an individual loses his autism diagnosis, “Keep that diagnosis as part of your story. It’s informative.”

Ann Rappoport is a contributing writer to MetroKids

Categories: Autism Research & Advice