Adjusted annual probability of acquiring an ID diagnosis by Medicaid enrollment disruption status among autistic Medicaid beneficiaries during 2008–2016. CREDIT Meghan Carey, Drexel University

Autistic individuals often rely on Medicaid for insurance, but the transition to adulthood can, and often does, impact their enrollment status. In continuing to examine how autistic individuals use Medicaid, recent research from Drexel University’s A.J. Drexel Autism Institute has identified a trend in intellectual disability diagnoses among autistic young people that is likely indicative of a system-wide problem that makes it difficult for them to maintain coverage into adulthood.

It’s estimated that one in three autistic people use Medicaid, with nearly 70% of the enrollees being children. During the transition to adulthood, autistic young adults’ coverage can be disrupted for many reasons. At age 19, autistic young adults are reassessed for Medicaid eligibility as an individual — rather than being allowed to continue coverage as part of their family. At age 21 most states terminate autism support resources provided by the education system, which can also disrupt Medicaid access. And most states don’t have autism-specific eligibility criteria included in their Medicaid waivers, and most states that do have autism-specific eligibility criteria only cover children.  This means people whose only medical diagnosis is autism may not be eligible to continue Medicaid coverage as an adult.

Medicaid’s waiver system is currently set up to allow tailored health care services for individuals diagnosed with an intellectual disability through their transition to adulthood. Intellectual and developmental disabilities are a larger class of conditions, including autism, which is characterized by its social-behavioral differences and repetitive or restricted behaviors. The Centers for Disease Control and Prevention (CDC) uses the term intellectual disability when there are limits to a person’s ability to learn and function in daily life. For the vast majority of individuals diagnosed with autism or intellectual disability, those diagnoses are made in childhood – typically by age 8.

Previous research has found that during the transition to adulthood, autistic individuals are more likely than their non-autistic peers with intellectual disability to lose their Medicaid benefits and not re-enroll. To examine this more closely, the Drexel team decided to look at whether autistic young people who experienced disenrollment from Medicaid were actually more likely than autistic young people who had not experienced disenrollment to be diagnosed with intellectual disability in adulthood.  

Led by Meghan Carey, a doctoral student in the Epidemiology and Biostatistics department in the Dornsife School of Public Health, the research team examined national Medicaid claims data from the 2008–2016 to study the probability of autistic young people, who did not have an intellectual disability diagnosis in their first year of Medicaid enrollment, receiving an intellectual disability diagnosis later.

“We found that one in five autistic individuals, ages 8-25, received an intellectual disability diagnosis during follow-up,” said Carey. She also noted that while the co-occurrence of intellectual disability among the autistic population enrolled in Medicaid is common – about 25% – intellectual disability is most often diagnosable in early childhood, especially as children enter school when cognitive testing is delivered more frequently.

“We would expect the number of accrued intellectual disability diagnoses after age 8 to be substantially lower than the observed 19%,” said Carey. “Further, the American Psychological Association suggests any newly acquired intellectual disability after age 18 should be diagnosed as a neurocognitive disorder or another diagnosis, unless there was a traumatic brain injury, which is inconsistent with the peaks of intellectual disability accrual at ages 19 and 21 observed in this study.”

Because most states don’t have autism-specific criteria for Medicaid eligibility, Carey noted the research team hypothesized, and found, that autistic individuals who experience disruptions in Medicaid coverage – or periods of disenrollment – would be more likely accrue an intellectual disability diagnosis later, because in their home state, their autism diagnosis alone was potentially insufficient for retaining Medicaid coverage.

“New intellectual disability diagnoses may help autistic youth with coverage disruptions regain – or when receiving a diagnosis proactively, retain – Medicaid coverage and allow for continued health care service access,” said Carey. “However, it may also mean that autistic young people are no longer receiving services related to their autism diagnosis, which could have negative effects on their health.”

Carey and her coauthors hope that this research strengthens the call to ensure lifelong Medicaid coverage for autistic people.

One solution to this problem, the team suggests, would be to adjust Medicaid waivers. A change to states’ waivers that ensures adequate coverage for autistic people without a co-occurring intellectual disability diagnosis, and ensures continuity in coverage through adulthood, could be an effective approach to mitigate these disruptions to Medicaid coverage — and the need for people to be reexamined for intellectual disability diagnoses in young adulthood, according to the research team.

“Their service needs don’t just end when they become adults,” said Carey. “Given Medicaid is a critical safety net insurer and the lifelong needs of autistic individuals, policies aimed at ensuring Medicaid coverage continues from childhood throughout adulthood are essential to meet the health care-related needs for autistic people.”

Young children with common ear, nose, and throat (ENT) issues may be at subsequent risk of autism or high levels of demonstrable autism traits, suggests research published online in the open access journal BMJ Open.

Early identification and treatment of ENT conditions may improve these children’s quality of life and potentially help shed light on some of the origins of autism, say the researchers. 

The causes of autism are likely to involve an interplay of genetic, environmental, and biological factors, and the origins of each autistic trait may also differ, note the researchers.

Previous research suggests that ENT conditions, such as ear infections, ‘glue ear’, and sleep disordered breathing, may have a role in the development of autism.  But most of this evidence is based on health records, which may have biased these findings, because parents of children with suspected autism may be more likely than other parents to seek medical help for their offspring, explain the researchers.

To avoid this, the researchers drew on participants in the long term Children of the 90s study, also known as the Avon Longitudinal Study of Parents and Children (ALSPAC). This has tracked the health of more than 14,000 children since birth and that of their parents from the early 1990s onwards.

The current study is based on comprehensive data for more than 10,000 young children who were closely monitored throughout their first 4 years. 

Their mothers completed 3 questionnaires when their children were aged 18, 30, and 42 months, which were designed to record the frequency of 9 different signs and symptoms relating to the ear, nose, and throat as well as any hearing problems.

They also completed 3 questionnaires when their children were just over 3, nearly 6, and 9 years old. These were designed to pinpoint speech coherence, social and communication issues, repetitive and abnormal behaviours, and sociability, traits which are characteristic of autism.  A diagnosis of autism was confirmed from educational records and parental feedback, among other sources.

Adjustments were made for 10 potentially influential ‘environmental’ factors: early or late birth; sex; number of mother’s previous pregnancies resulting in a live or stillbirth; breast feeding; postnatal depression; mother’s educational achievements; mother’s smoking at 18 weeks of pregnancy; mother’s belief in her own agency; child’s exposure to environmental tobacco smoke at 15 months; child’s attendance at a crèche/other daycare by the age of 30 months.

In all, 177 children had a probable diagnosis of autism:139 boys and 38 girls. Those with autism traits were defined as the 10% of the sample with the highest trait scores. 

Early evidence of breathing through the mouth, snoring, ear pulling or poking, reddened and sore ears, worse hearing during a cold, and rarely listening were all more commonly associated with high scores on each of the 4 autism traits, and with a diagnosis of autism.

Pus or sticky discharge from the ears was also associated with autism and with poor coherent speech. 

Among the different ages tested, strong associations were particularly observed when the child was aged 30 and 42 months. Children with high scores on autistic traits at 30 months had more ENT signs. Autism itself was significantly associated with all signs except for symptoms of sleep apnoea  (interrupted breathing during sleep).

Factoring in the 10 environmental features made little difference to the results. For example, children with discharge from their  ears were more than 3 times as likely to have autism, while those with impaired hearing during a cold were more than twice as likely to do so. And children who failed to react to nearby noise were more than 6 times as likely to have autism at this age.

However, the researchers point out: ** “These ENT signs and symptoms are very common in childhood and most children who experience them do not go on to be diagnosed with autism. For example, of the group of around 1700 children who snored at age 30 months, most (1660) weren’t diagnosed with autism later on.” 

The researchers acknowledge various limitations, including the loss of some children to subsequent monitoring, as is the case with any long term study, and the lack of ethnic diversity among the Children of the 90s participants, limiting the wider applicability of the findings.

What’s more, the children weren’t examined consistently to determine a diagnosis of autism; rather, a strategy to assess the probability of a diagnosis using a variety of different sources was used instead.

But they nevertheless conclude that the associations they found “may be important because (1) these ear and respiratory signs may be early markers of increased risk of autism, (2) they may inform the origins of autism, or (3) they may highlight co-occurring conditions that if treated may lead to a better quality of life for children with autism.” 

They add: “This study adds to the evidence that, compared with a typical population of the same age, early ear and upper respiratory symptoms are more common in those subsequently diagnosed with autism or with extreme levels of autistic traits.”

But they caution: “It is not possible to determine whether these ENT conditions have a causal role in the development of autistic traits or are related to an unmeasured factor. 

“One possibility, for example, could be the consequence of the increased prevalence of minor physical anomalies in individuals with autism, including anatomical differences in the structure and/or positioning of the ear, with such differences in ear morphology increasing the risk of ENT conditions.”