Nonpersistent Autism/Losing Diagnosis - Why?

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A study published 2 October in JAMA Pediatrics reports that 79 of 213 children who were diagnosed with autism at 12 to 36 months of age no longer met criteria for the condition at 5 to 7 years old. Spectrum asked autism researcher Deborah Fein, Board of Trustees Distinguished Professor Emeritus of Psychological Sciences at the University of Connecticut in Storrs, for her thoughts on the findings. In a 2013 study, Fein and her colleagues described a sample of people who lost their autism diagnosis.

The new paper by Elizabeth Harstad and her colleagues reports that among the toddlers her team considered — all aged 12 to 36 months and diagnosed with autism based on criteria in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders — 37 percent had lost the diagnosis by age 5 to 7 years. This estimate of “nonpersistent” autism is nearly two to three times higher than that reported in most previous studies, which have estimated that approximately 10 to 20 percent of autistic children lose their autism diagnosis with age. Understanding the reasons for this discrepancy is important not only for predicting a child’s prognosis and recommending services, but also for defining an autism subtype that may differ in both genetic and environmental contributions.

So what might explain the high estimate reported in the new study? The researchers put forth one possibility: The children in their study were older by a year or two at follow-up than the children in the prior studies, giving them more time to lose core signs of the condition. But this cannot fully explain the discrepancy, because several past studies have followed children diagnosed as toddlers into early adulthood and have come up with lower estimates for nonpersistent autism.

Harstad and her colleagues report that female sex and relatively high adaptive functioning at baseline significantly contributed to loss of diagnosis, based on regression models that examined multiple factors. Although adaptive functioning alone reached significance as a predictor of persistent versus nonpersistent autism, the data show that the nonpersistent group had higher scores on every cognitive and language measure at both baseline and follow-up. Scores from the Autism Diagnostic Observation Schedule were not available for the initial early diagnostic evaluation; this is unfortunate, because having less obvious signs of autism to begin with is likely to also contribute to the nonpersistence of autism.

And the researchers mentioned the sex difference in the discussion but perhaps underplayed it: 32 percent of the boys in the study (who, of course, predominated in the sample) showed nonpersistence, compared with a whopping 61 percent of the girls.

One other factor that is likely to have been quite important in these outcomes is intervention. The study was done at Boston Children’s Hospital. Massachusetts in general, and Boston in particular, has a wealth of early intervention possibilities for autism. The study investigators don’t make much of the fact that 197 of their 213 participants, or 92 percent, received therapy, primarily applied behavior analysis (ABA), but this seems quite important and quite different from what might be found in other regions of the United States. In fact, I might have concluded that the high prevalence of nonpersistent autism and the high usage of ABA therapy in their sample serves as evidence for the effectiveness of ABA.

One methodological strength of the study is that the investigators looked at demographic differences between participants and eligible nonparticipants. They found that Hispanic families were less likely than families from other racial and ethnic groups to enroll in the study. What’s more, the children who participated had higher baseline cognitive and language scores than nonparticipants, and most of them were white and from affluent families with mothers who had higher educational levels. The fact that many of the participants had to be assessed during the pandemic, when there may have been less interruption of in-person services for white and more affluent families, may also have increased the disparities in accessing effective therapies.

The relationship between autism diagnosis and cognitive functioning in the persistent and nonpersistent groups, though somewhat complex, raises the age-old question of whether autism can span the entire range of intellectual ability, and how this range affects outcome. My colleagues and I studied a group of 2-year-olds with autism and quite low cognitive functioning (all below developmental age equivalence of 12 months) and followed them to age 4. We expected that some of these children would lose the autism diagnosis but retain a diagnosis of intellectual disability, but contrary to expectation, virtually all of them retained a diagnosis of severe autism plus intellectual disability. This is consistent with the Harstad study, which found that none of the nonpersistent children had cognitive scores below average.

So what can one conclude from this interesting and valuable new study? I would suggest that the paper presents possible outcomes for relatively privileged children — those who are white, affluent and have access to early diagnosis and effective early intervention, as well as relatively high cognitive and adaptive functioning at the time of diagnosis.

I do wonder....

Is Diagnosis is based on signs rather than symptoms?

Signs are things which others observe or can be measured. Symptoms are what the person themselves feels and experiences.

Intervention such as ABA is intended, if my understanding is correct, to train a person to show particular desired behaviours and refrain from other behaviours.

So by training a person not to show certain signs then diagnosis based on observing those signs would not be given.

Which ignores everything the autistic person may actually experience - sensory overload, anxiety in social situations, and perhaps now additional symptoms to do with trauma through having to go through such situations and avoid showing signs of anxiety or distress....

While I note ABA offers the claim of an evidence base, the question which interests me is "Evidence of What?"

I have a bad feeling around all this - that it is going to result in people sent out into the world trained to fake it hugely in the face of much internal distress, And, with a diagnosis removed, all the supports for which a diagnosis might open the door also removed, which seems to set things up to end badly for the person.

Behavioural interventions can make just about anyone behave differently - if the right programme is designed and implemented consistently.

It will never change a persons intrinsic nature though. In the case of an AU person then this conditioned masking is likely to cause profound long term stress and impact upon their mental health.

The application of ABA and other forms of behaviourism equates to conversion therapy, is contrary to the principals of safeguarding human rights and is unethical in my opinion.

In the UK we have a 'watered down' form of ABA known as PBS (positive behaviour support). The same applies to this in my view.

I read a statement from a psychiatrist saying something along the line: "People think they will get an autism diagnosis based on their own perception of being different from other people. That's not how it works. You get a diagnosis if other people perceive you as different." That's an extremely patronising method of diagnosing a condition. The criteria is that it should affect other people in certain ways. I think that has to change in the future.

I understand why people hate ABA but teaching a little kid how to play a game or hang their coat up is unlikely to cure them of autism or even effect their feelings in the short term.

Also kids of that age don't really mask, under 5s, autistic or NT just do what they want and don't have social anxiety

You need to be careful with what you’re suggesting as your only be encouraging more ABA, if you hate it that much.

After ABA they lose their diagnoses or become less autistic just what those who push it want to hear LOL

That's a damnable lie and it's one of the reasons why so many people don't get diagnosed until later on. If under 5s don't mask, then how do you explain the people that somehow manage to go decades without diagnosis until ultimately being diagnosed?

After ABA people may lose their diagnoses because all of the outward signs have been eliminated and there isn't currently any real interest in internal signs. If they were losing their diagnosis because they were no longer autistic, that would be a very different dilemma.

If a 4 year old was so high functioning that they were so socially aware of wanting to fit in and all the main reasons why people mask in the first place, its unlikely they would be doing ABA.

More likely they would have Asperger's that would hardly be noticeable until much later, even the teenage years.

Very young autistic children under 5 doing ABA usually have more severe autism symptoms and are usually socially oblivious, their symptoms stand out a mile and its usually accompanied by language delay even ID.

I do wonder....

Is Diagnosis is based on signs rather than symptoms?

Early diagnosis is heavily based upon a parent or guardian's subjective evaluations. If this person isn't being completely honest or is otherwise biased, a mis-diagnosis may occur.