Contributor: Thomas Frazier, II, PhD
There is no known cure for autism. But recent research might make parents wonder if it ever goes away — either through therapy or through a child simply growing older.
Researchers looked at parent’s reports on 1,420 children who once had an autism diagnosis. Around 13 percent of these children “lost the diagnosis” later — meaning they no longer had signs and symptoms that fit on the autism spectrum.
The idea of the lost diagnosis has been a hot topic among researchers in recent years. For parents who are curious, there are a few things you need to know.
When I first read this study, I thought 13 percent seemed really high. Could that many patients really lose their autism diagnosis?
Then I realized why the percentage seemed high to me: I work in a specialized care clinic. Specialists are more likely to get the diagnosis right early. But that’s not necessarily true among all providers.
In the study, only 10 percent of children who lost their diagnosis were first diagnosed by an autism specialist. But among children who kept their diagnosis, the rate was 20 percent.
The lesson for parents is to seek a specialist’s diagnosis. Doing so can help you avoid a misdiagnosis.
That’s not a knock on any practitioners, either. Often a school counselor, pediatrician or other general clinician will start the process. But it’s worth following up with a thorough multidisciplinary assessment at a specialty clinic.
When a specialist gives an autism diagnosis, it’s among the most reliable among all neuropsychiatric disorders.
You might think of many cases not as a lost diagnosis but as a replaced or corrected diagnosis.
In the study, 74 percent of parents said their child’s diagnosis was updated because of new information. Typically that was a different diagnosis.
There’s a lot of crossover with attention deficit hyperactivity disorder (ADHD). But there are other possibilities, such as learning or intellectual disabilities, anxiety and depression, and mood disorders. When children get these new diagnoses, they get shifted into the right therapy to treat them.
The good news is that in a lot of these cases, the behavior therapy we perform for autism likely would have been helpful — and certainly not harmful. Speech therapy can improve many cognitive conditions. And behavioral therapy can make a big difference in ADHD.
But therapy can be expensive, and you want to direct it where it will do the most good. That’s why getting the right diagnosis at first matters so much.
What about the kids who lose an autism diagnosis and don’t get a new diagnosis? Did their autism go away? Those are big questions for parents.
We do see very rare cases of what researchers call “optimal outcome.”
Usually these are high-functioning children. They are diagnosed because of mild behavioral signs and symptoms. For example, they may be developing language or social skills slowly but still have strong ability to organize their world.
Eventually, often after a few years of therapy, they no longer fit the diagnosis. The study found this in about 3 percent of cases.
I don’t want to downplay these success stories. Helping kids improve is exactly what we want to do every day.
But I do must stress that it’s not the norm. Based on you child’s case — especially if the diagnosis came from a specialist — work with your care team to set realistic goals.