Do difficulties remain once a diagnosis of autism is lost?

It used to be thought that autism was a lifetime condition, but more recent experience shows that some children can lose that diagnosis. A recent study looked to see if children who lose the diagnosis still experience some possibly related difficulties. The study’s lead author, Dr. Lisa Shulman, is a developmental pediatrician at Albert Einstein College of Medicine/Children’s Hospital, New York. A report on the study was presented at the Pediatric Academic Societies’ annual meeting in San Diego. A summary can be found here.

A proportion of toddlers who are diagnosed with Autism Spectrum Disorder (ASD) lose that diagnosis later. This seems not to be just a matter of an earlier misdiagnosis. See, for example, the Fein study, which looked at a group of children who had lost their ASD diagnosis. These children started off with symptoms comparable to a group of children who retained their diagnosis of ASD, but later had mean scores that did not differ from some typically developing children in areas such as socialization, communication, face recognition and language.1

It seems that the later loss of diagnosis can represent a real change for these children. This present study set out to assess whether or not children who have lost their ASD diagnosis still have recognisable learning, cognitive, emotional/behavioral and educational needs.

The study looked at 38 children who had been diagnosed with ASD (at an average age of 2.6 years), but who four years later no longer met the diagnostic criteria. These were around one in fourteen of the 569 children diagnosed with ASD in the hospital’s early intervention program between 2003 and 2013.

At enrolment the children in the study showed a range of associated difficulties including an intellectual disability (33%) or a borderline condition (23%). Four years later, in addition to losing their ASD diagnosis, none of the children showed an intellectual disability and jonly 6% were borderline. However, in contrast to this marked reduction in some difficulties, 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). Five percent had a significant mental health diagnosis.

A key issue for many children is their ability to enter into mainstream educational provision. Of the children in this study, 39% were in a mainstream setting, although a third of these were receiving additional support; 29% were in integrated settings, and 21% were in self-contained classes.

The loss of the ASD diagnosis was a significant gain for these children, with considerable implications for the course of their future lives. The study also showed that several other difficulties were considerably reduced for these children and that two fifths were able to attend mainstream provision. However, the study did show that some areas of difficulty remained, including educational needs experienced by the majority.

These are important findings that suggest that the loss of a diagnosis of ASD may not be an all or nothing matter. While the loss of a diagnosis implies a significantly altered outlook for the child, some difficulties may still remain that need to be addressed by parents, clinicians and educationalists.

1 Fein, D., Barton, M., Eigsti, I.-M., Kelley, E., Naigles, L., Schultz, R. T., Stevens, M., Helt, M., Orinstein, A., Rosenthal, M., Troyb, E. and Tyson, K. (2013), Optimal outcome in individuals with a history of autism. Journal of Child Psychology and Psychiatry, 54: 195–205. doi: 10.1111/jcpp.12037

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