Researching the “Loss” of an Autism Diagnosis

CONTACTUS-lostandfoundStudies state that 3 to 25 percent of children with autism lose their diagnosis. This makes parents and professionals wonder, did those who “recover”, truly have autism at diagnosis? Or do they still have autism, but have more subtle symptoms?

Dr. Deborah Fein, psychologist, has studied this phenomenon extensively upon realizing that many children diagnosed with autism improved significantly over the years, to the point of possibly being considered neurotypical. Like most clinicians, Dr. Fein believed autism was a lifelong condition. Dr. Fein and her team of researchers analyzed the diagnoses of 34 children with ASD, as well as their loss of diagnosis and improvement in symptoms.

The team analyzed communication skills, academic abilities, social skills, among other things. By all accounts, the group seemed to function no differently than those who never had autism. She elaborates, “They even did well with daily living skills, [which] can befuddle people with autism who have average and above-average intelligence.”

“[The word] ‘recovery’ carries so much baggage,” Dr. Fein states. “When you say ‘recovery’, it conjures up a period of normal development, then they have a disease, and now they’re recovered. Instead, this group reached an ‘optimal outcome’.”

The research team looked for remnants of ASD in the group that no longer qualified for a diagnosis, utilizing fMRI scans to measure brain activity as they each read short sentences aloud and answered various questions. Dr. Inge-Marie Eigsti, clinical psychologist, led the team to test 16 people with “optimal outcomes”, 23 with high-functioning autism, and 20 of their neurotypical peers.

The scans of the group with optimal outcomes resembled those of the group with autism, but also differed. This group appeared to use different areas of the brain for sentence comprehension tasks. Researchers believe they may have learned to compensate for their autism by using new pathways to process language. Dr. Fein states, “It’s a confirmation that they really were autistic when they were little. Early intervention may have helped them function typically, but they do not use the same areas of their brain as their peers who never had autism.” This study will need to be repeated to see if they receive the same results.

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