Persistence of Autism – Oct’23 Research on children losing ASD diagnosis

Topics we’ll cover:

• The new October 2023 study
• Questions about non-persistent autism

The new October 2023 study

The latest autism research study found that 37% of children with autism lost their diagnosis!

Wow! That’s profound, right? Let’s learn the science in this study. 

Losing the autism diagnosis is a controversial topic. Please note, that I am not expressing any opinions here. I’m guiding you through the science to let you know what is possible for your child. 

This study has used a new phrase, and that’s “non-persistent autism”. In the past, researchers used to call the no-longer-qualifying-for-an-autism-diagnosis ‘optimal outcome’. I’m not sure if non-persistent autism will replace ‘optimal outcome’ in the scientific literature. I just want you to be aware that the scientific and medical field struggles with what to call this. 

About the study

This study was done in Massachusetts, and it was published in October 2023. This study involved 213 participants, so that’s a pretty significant study size. All participants were diagnosed with autism between 12 months and 36 months. The researchers studied the children at age five through seven.

That’s when they were able to see that 37% of those in the study lost their diagnosis and had non-persistent autism. At this point, you might be wondering, How?

This is a quote from that research article,

I think many parents know this, and that’s their intuition, but it’s important for you to see this direct quote from a research article. Prior studies have shown that rates of persistence of autism for children diagnosed at a young age range from 68% to 100%. Losing the autism diagnosis is not anything new. 

Study design

This is a natural history cohort study, which means there were 213 participants from a large academic hospital system. The children were diagnosed when they were between the ages of 12 and 36 months, and when they were diagnosed, they were not part of any research study. Since they were part of a large academic hospital system, the researchers were able to tap into that database, construct a study, and then reach out to the parents and have a re-assessment when the children were five to seven years old.

And this happened between 2018 and 2022. You can see it takes a long time to gather data like this. Can you imagine four years? Four years it took just to collect the data. 

In this study, researchers found that 37.1% did not continue to meet the diagnostic criteria for an autism diagnosis. That means they lost their autism diagnosis. It was not persistent. Another word is also ‘optimal outcome’ to describe this. How? Everyone’s wondering how. 

Interventions used 

Parents provided demographic data of themselves through a questionnaire completed for the study, and parents also reported specific types and hours per week of each intervention received from 1.5 years of age until research assessment at six-month intervals. So that was a lot of recording. I’m sure those parents had to think back a lot of times. These were the interventions they recorded: 

• ABA or RDI
• ESDM, that is the Early Start Denver Model
• Speech Therapy
• OT, Occupational Therapy
• Physical Therapy
• Developmental Specialist
• Floor Time, Play Group
• Social Communication
• Emotional Regulation, and 
• Transactional Support

Here’s a figure I pulled straight from the research article:

It goes over the demographics. They have the ages, they have the sex. There were 177 boys and only 36 girls included in the study, so it is definitely skewed quite a bit. There are discussions on race, ethnicity, insurance type, whether the child was born premature, maternal education, and income.

Discussion

Here’s a quote directly from the research article, 

“Children with higher baseline adaptive functioning scores and girls were more likely to have non-persistent versus persistent autism.” 

While all the children in this sample received interventions and most received autism-specific interventions, the intensity of interventions in the 18 months after autism diagnosis was not associated with autism persistence. That is extremely important to understand. 

When researchers were discussing another study that showed non-persistent autism — remember, this is not the first study to show non-persistent autism, the research is quoted in the article,

“In that study, for every additional month between initial and follow-up evaluations, children showed a 1.3 fold increase in the likelihood of losing the autism diagnosis.” 

That means the more time there was between diagnosis and follow-up, the more likely it was that the child could lose their autism diagnosis. That goes exactly opposite from what a lot of people believe in the mainstream. The researchers state that the older age of our sample follow-up, as well as differences in demographics, could be associated with higher rates of non-persistent autism in our study. This is extremely important to understand. It is also uncertain how the development of these children will progress over time since they’re only 5-7 years of age at research assessment.

 I know we want our children to be happy and healthy, but it’s important to remember that they are children. They still have a lot of life to live, and it’s great to be able to give them the most solid base possible. But remember, it doesn’t guarantee really anything in life. 

And here’s a very important discussion part of the article. The methods of this study did not allow us to determine whether children with non-persistent autism improved because of inherent differences in their developmental trajectories or because of interventions they received. I’m going to input here that the scientists are lacking a complete analysis in so many other areas of health and interventions. This is really just scratching the surface. It just proves again that it’s possible, scientifically possible to lose the autism diagnosis. Scientists are not 100% clear yet on how this is happening, and this research article really didn’t delve deep into areas of health. They looked at behavioral interventions. This is a very important piece of the article to understand. 

However, statistical analysis revealed no association between the highest number of hours per week of interventions received in the first 18 months after autism diagnosis and autism persistence. Many times during this journey, parents’ intuition says, “You know what? But this behavioral aspect is not working. Either the child is crying all the time, or they don’t want to go, or it just doesn’t feel right.”

It’s so important for parents to see the scientific literature so that they can follow their intuition, follow their guts. Because out there in the mainstream, there are statements like, “Oh, a child must receive 40 hours of ABA per week, always intensively, all the time.” That’s not the case that was and that’s not what was found here, specifically with kids who lose their autism diagnosis. Furthermore, children with non-persistent autism had a gradually decreasing intensity of intervention over time, in comparison with those with persistent autism.

References

 Here’s the reference: JAMA Pediatr. 2023 Oct 2:e234003.

Questions about non-persistent autism

What is the significance of studying the persistence of autism from early childhood to school age? It’s important to understand autism, how it progresses and how beneficial therapies and interventions are. 

Years ago, it was thought that autism was a lifetime diagnosis. Several research studies in the past 10 years have provided scientific proof that autism diagnosis is not a lifetime diagnosis for everybody. As parents, we need to know this information so that we can make the best decisions for our children. 

How do baseline adaptive skills and cognitive function affect the persistence of autism in children? 

That’s a great question. Kind of complex too, right? From the latest autism research into non-persistent autism, the only variables associated with increased odds of being in the non-persistent autism group at six years of age were higher baseline adaptive skills and the female sex. 

What is the role of gender in autism persistence and how does it relate to diagnosis? 

Again, from that one article from October 2023, the latest research into non-persistent autism, females lost the diagnosis at a higher rate than males. Let me just say that the sample size for females in that study was very small. In that study, they had 36 females and 177 males. Thirty-six females is a small number to extrapolate too much information from that. Technically, they do lose the diagnosis at a higher rate than the males do, but the sample size was small in that study. 

How do the study’s findings contribute to our understanding of autism in clinical populations? 

This adds to the growing clinical studies showing that the autism diagnosis is not a lifelong diagnosis for some. The research needs to start focusing on how, and no longer on if it’s possible. We’ve already established that fact, it’s definitely possible. It’s scientifically proven that it’s possible to lose the autism diagnosis. They call it an optimal outcome, or they call it non-persistent autism. We know that. That is an established scientific fact. If anyone tells you that autism is lifelong, they do not know the current science. 

Losing the diagnosis has also been possible for decades. Many parents knew that, but now the science is there. The science confirms losing the diagnosis as possible, and hopefully now the field will start to evolve to study the how in detail. 

Many parents do not want to wait for the studies to show how. They’re using science and research publications, knowledgeable doctors and lab tests, and most importantly, their intuition to help their child live their life to their fullest potential. Every child deserves to be as healthy as possible. 

How can parents, caregivers, healthcare providers, and educators better support children with autism based on these new research findings? 

Regardless if someone loses a diagnosis or not, it’s important to treat that child with respect. That means presuming competency. 

From my experience of working with parents in 17 different countries, this is what I’ve learned:

Receptive communication for the person with autism is often intact. The receptive communication is the process of listening, receiving, and understanding a message from another person. Receptive communication is understanding something. It can be thought of as input. Data is coming at someone. 

Expressive language is typically much slower to develop in those with autism. Expressive communication is a message to another person. Me, I’m talking to you. I’m expressing. 

When children are in the process of an optimal outcome, that gap between receptive and expressive starts to close. It is a beautiful thing to watch. 

What happens is the child gets healthier and then starts to express and communicate. Then the parents and the teachers or doctors, truly start to understand that their child has not had a problem with receptive language, with understanding, it’s that gap that decreases. It’s so much fun, this just unfolding of the child. 

So many times I’ve heard parents say, “Where did they learn that? How did they know that?” It’s because, receptively, they’ve been with you all along. 

That is why presuming competence is extremely important. Regardless of whether someone retains the autism diagnosis or not, it’s absolutely great when parents, teachers, and therapists really see that the child is smart. The child is curious. The child likes to learn. The child wants to be part of things. When that gap closes, it’s just fun and really special to watch.