Average autism diagnosis delayed by more than two years

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The average delay from an initial autism screening to obtaining a diagnosis is more than two years, according to a new study.

The findings may explain why the average age at diagnosis has stalled at 4 years old since 2000, despite recommendations from the American Academy of Pediatrics in 2007 to screen all children at 18 and 24 months old.

The two-year gap is not a surprise, but it is disappointing and unacceptable, says Sally Ozonoff, professor of psychiatry and behavioral sciences at the University of California, Davis, who was not involved in the study.

The new work is an initial step in a project focused on improving early detection of autism, says lead investigator Whitney Guthrie, assistant professor of psychiatry and pediatrics at the Children’s Hospital of Philadelphia in Pennsylvania. Children with autism can’t receive care until they have a diagnosis. And the earlier behavioral interventions can start, the more effective they are likely to be.

“A long diagnostic odyssey is really stressful for families,” Guthrie says.

In another study by Guthrie and her colleagues, toddlers who received a nine-month-long intervention starting at 18 months old showed greater improvements in social communication and self-help skills than did toddlers who started the same regimen at 27 months old.

Because of the diagnosis delay, “we are wasting prime intervention time during the window of high brain plasticity,” Ozonoff says.

Guthrie and her team examined the electronic health records of 1,915 autistic children in the TriNetX research network. The database contains anonymized records for more than 105 million patients from 67 health-care organizations.

Autism diagnosis in that cohort occurred, on average, almost 27 months after the first developmental screening, the team found. The findings were published last month in the Journal of Pediatrics.

The researchers found no significant difference in the delay time based on sex, race or ethnicity, despite previous research highlighting such disparities. This does not mean the disparities don’t exist, but rather that the heterogeneity of the dataset might make them harder to see, Guthrie says.

The findings also revealed no advantage from repeated screenings, despite other work showing that multiple screenings shorten the diagnostic delay. This discrepancy is probably due to the fact that the health records in the dataset do not include the results of individual screenings, but just that they took place, Guthrie says.

Several factors could be contributing to the delay, including imperfect screening tools and hurdles in the health-care system, Guthrie says. “There are so many more families that need an autism diagnosis than there are places to go, slots for autism evaluations. The need greatly eclipses our country’s capacity.”

creening tools have many false positives by design, “because they’re meant to cast a broad net and leave no stone unturned,” Ozonoff says. But that can increase the demand for appointments with diagnostic specialists and prolong the wait for everyone, says study investigator Qiushi Chen, assistant professor of industrial and manufacturing engineering at Pennsylvania State University in State College.

Expanding the pool of who can diagnose autism could ease the bottleneck. Primary care physicians may not feel comfortable giving a diagnosis based on their residency training alone, and instead refer their patients to specialists, says Mona Doss Roberts, assistant professor of pediatrics at Boston University in Massachusetts, who was not involved in the paper.

Training a primary care pediatrician at a Boston hospital to diagnose autism decreased the wait time for a developmental assessment from 135 to 68 days, according to a pilot study by Roberts and her colleagues, published last month.

On the screening front, Guthrie and Chen are working on a machine-learning-based tool that factors a child’s entire medical history — including their sex and whether they have siblings with autism — into their screening results to increase the accuracy.

The tool could make the best use of limited health-care resources by prioritizing the children with the greatest likelihood of having autism, Chen says.

It was proved a couple of years back early intervention has a positive impact in reducing disability.

https://www.abc.net.au/news/2021-09-21/ ... /100476422

In plenty of cases of ABA "success" = compliance with social norms. These norms can vary by society. For example, lack of eye contact is considered an important impairment in America. This is not true everywhere.

For a population arguably too trusting ABA teaches further dependence on others. It often requires 25-40 hours a week of intensive training supplemented by parents. All of those billable hours make the ABA industry rich and it is often stifling for the child. As the ABA industry has a monopoly on Autism therapies in America it does monopolies what monopolies do stifle competition.

If you are a parent of an autistic child and do not want ABA you may have to move, which is the worst thing for the change-averse child, and might be bad for the parent's career. If you can afford it you often will have to pay out of pocket to take a chance on an unproven therapy. Most often if you are that parent you will take the therapy insurance pays for, which most authorities say is the gold standard.

Every child is different. But in general, I am against the intervene early and often or else mentality these days. Kids need to experiment and learn from failures and successes.

What is the new therapy?
The therapy itself is called iBASIS-VIPP and it was developed from a study at the University of Manchester that we funded back in 2011. We didn't fund this new study, though. It is a play-based therapy that aims to help neurodivergent children build skills in a way that is natural to them.

In the therapy, parents and a therapist work together to identify how a child prefers to play, using video recordings. They then adapt their interactions with their toddler to match that style. By focusing on what comes naturally to the child, especially when that is different to other children, this therapy builds opportunities for high-quality interactions between parents and their babies. It’s directly opposite to the idea of teaching children to hide or ‘mask’ certain behaviours.

In the study, toddlers who received the therapy had stronger social communication and language skills by the end of the trial. Those skills continued to be stronger up to three years of age. This matches the result of earlier studies. It also matches the strong evidence for the PACT therapy, which uses the same approach to help slightly older autistic children.

Why is this therapy important?
Playing is one of the first ways that young children start to learn about interacting with other people. Parents and public services put a lot of effort into helping children learn skills during these important early years of development. However, that support doesn’t always suit autistic children, who may learn in different ways to their peers. Through this therapy, parents and therapists try to ‘speak the child’s language’ and create a social environment that matches their unique way of interacting with the world.

What could this mean in practice?
This new therapy could be offered to families before they receive a diagnosis of a neurodevelopmental condition, which can sometimes take years of waiting. It would help ensure that more babies and toddlers are supported to learn skills is a way that is natural to them.

What are the key findings of the research?
The researchers have identified two main findings from their work. The first is that the therapy boosted social development. We think this is really positive. It confirms what a lot of autistic people and families have always said: optimising the environment for autistic people and following their interests is the best possible way allow autistic people to build skills.

The therapy doesn’t fundamentally change who a child is, and it doesn’t try to. The therapy starts by accepting that each person is different and focuses on finding out how best to support them to learn in ways that are more natural to them. It builds on who that child is to support them as they develop their social communication skills.

The second key finding is a reduced diagnosis of autism in children who received the therapy. This is something we find more problematic and we feel more understanding of the long-term impact is needed.

For example, could a lack of an autism diagnosis mean that the children are not able to access the right supports as they grow? As it stands, an autism diagnosis is the only thing that allows people to access the support that they need.

Similarly, could it mean children who receive this therapy and don’t receive an autism diagnosis are less likely to pursue an autism diagnosis in future? We don’t yet know the long-term implications of this research and it may be that for some an autism diagnosis might be appropriate in the future.

For many autistic people, autism is a part of their identity. If a diagnosis does come at an older age, has that child missed out on an important sense of community and peer support?

Social communication skills are one of the main things measured during the diagnostic process to try to tell if someone is autistic. Because this therapy helps parents create more opportunities for babies to learn those skills, it means some will score lower on those parts of autism assessments. This may mean they don’t meet the criteria for an autism diagnosis.

I did have ABA in mind as the article OP and American source and reflected ABA talking points. Modern ABA is a more politically correct version of traditional ABA.

Let look at iBASIS-VIPP from a UK source.
Promising new social communication therapy for toddlers (explained) - Autistica

This is the type of therapy ND advocates here want to replace ABA. It is letting kids be kids.

In my opinion there are two factors in reduced diagnosis.
One is since they had not been screened so there is no way of knowing if they were autistic to begin with.

From what I have been reading in the UK there is funding/Austerity issues. As a result there is a triage situation where higher functioning people are not getting diagnosed. If the therapy moves kids into a “low” support needs category that kid won’t be diagnosed.