Autism diagnosis has become more common, but pandemic disrupted early detection, CDC says
The rate of children diagnosed with autism in the United States has been growing steadily since 2000, but two new reports from the US Centers for Disease Control and Prevention highlight disparities in the types of children identified to have autism spectrum disorder and setbacks in early detection.
In 2020, about 1 in 36 children had been diagnosed with autism by age 8, according to the CDC – about 2.8%. That’s up from a prevalence of 1 in 44 children in 2018 and 1 in 150 children in 2000.
But according to the CDC, this long-term trend has “largely been interpreted as improvements in more equitable identification of (autism spectrum disorder), particularly for children in groups that have less access or face greater barriers in obtaining services.”
For the first time, diagnosis was more common among Asian, Black and Hispanic children than it was among White children. The CDC researchers note that this shift “may reflect improved screening, awareness, and access to services among historically underserved groups.” In fact, between 2018 and 2020, autism prevalence rose more than twice as fast among Asian, Black and Hispanic children than it did among White children.
These findings are based on surveillance data from 11 communities that participate in the CDC’s Autism and Developmental Disabilities Monitoring Network. The data are not nationally representative and vary widely by location – from a prevalence of 1 in 22 children in California to about half as many in Maryland. The CDC says more research is needed to understand this variation, which could be related to differences in the strategies used to identify and diagnose the condition.
Still, some trends have stayed consistent.
Autism prevalence is significantly higher among boys than girls – in 2020, there was about a four-fold difference. But it was the first year that more than 1% of 8-year-old girls had been diagnosed with autism.
Also, disparities persist in identifying autism in children who also have an intellectual disability. In 2020, more than half of Black children diagnosed with autism also had an intellectual disability, compared with less than a third of White children. According to the researchers, this finding suggests a need to better detect and evaluate developmental concerns beyond cognitive ability.
Generally, children who have intellectual disabilities are more likely to be diagnosed with autism earlier. But early detection is important for all children with autism, as it helps connect them with helpful resources and interventions.
In recent years, good progress had been made in early detection of autism – an earlier CDC report found that children born in 2014 were 50% more likely to receive an autism diagnosis or special education by age 4 than those born in 2010.
Another new report published by the CDC on Thursday shows that there was evidence of continued improvement in these trends through February 2020, but the trends reversed as the Covid-19 pandemic hit with “sustained lower levels” of evaluations and identification of autism across most of the surveillance network.
In first six months of the pandemic, there were 217 fewer evaluations for every 1,000 children at age 4 than there were four years earlier. There were also nearly three fewer identifications for every 10,000 children, according to the CDC report.
“Disruptions due to the pandemic in the timely evaluation of children and delays in connecting children to the services and support they need could have long-lasting effects,” said Dr. Karen Remley, director of CDC’s National Center on Birth Defects and Developmental Disabilities. “The data in this report can help communities better understand how the pandemic impacted early identification of autism in young children and anticipate future needs as these children get older.”
Key Findings: Progress in Early Identification of Autism Spectrum Disorder, but Gaps Remain.
A study from the Centers for Disease Control and Prevention (CDC) assessed progress in early identification of autism spectrum disorder (ASD) in the United States from 2002 through 2016*. There have been concerns about lack of progress in early identification because the age when most children with ASD get their diagnosis has not changed much over time. This study used a different method to measure early identification that better captures progress and gaps.
ASD identification by age four years was four times as likely in 2016 as in 2002. This indicates that there has been improvement in early identification. In addition,
- Identification of children without co-occurring intellectual disability improved; and
- Children of every race and ethnicity were more likely to be identified over time.
Differences in early ASD identification exist based on whether children have co-occurring intellectual disability.
- Black and Hispanic children without intellectual disability were 30% less likely to be identified with ASD by age four years in 2016 than White children.
- Black children were 50% more likely than White children to be identified with ASD and intellectual disability by age four years in 2016.
- These findings could reflect differences in social determinants of health, which include factors such as socioeconomic status, housing, physical environment, and experiences with racism and racial discrimination.
Continued efforts are needed to ensure all children with ASD are identified early so they can receive services they may need to support their development as soon as possible.
*Estimates were based on data from 8-year-old children in sites participating in the Autism and Developmental Disabilities Monitoring Network surveillance years 2002 through 2016. “Identification” refers to either an ASD diagnosis or special education classification.
New insights into the sexual health and activity of autistic adults and adolescents
November 15, 2021
New research published this autumn in Autism Research, the official journal of the International Society of Autism Research, reveals significant differences in sexual orientation and activity between autistic and non-autistic people across the lifespan. As the largest study on the sexuality of autistic adolescents and adults, these results may have important implications on sex education and healthcare in the autistic community.
Using an anonymous, self-reported survey, researchers collected data about demographics, autistic traits, lifestyle information and medical history from a sample of 2,386 individuals (including 1,183 autistic individuals). The sample primarily consisted of females, white individuals, UK residents and those without intellectual disability, and participants ranged in age from 16 to 90 years, with an average age of 40.
Overall, the results show that while the vast majority of both autistic and non-autistic respondents reported having been sexually active, people with autism were less likely than non-autistics to report having ever engaged in sexual activity—and this is particularly true of autistic men.
However, while autistic adolescents and adults are less likely to engage in sexual activity than non-autistic adults, they are more likely to have diverse sexual orientations. People with autism were 8.1 times less likely to identify as heterosexual and 7.6 times more likely to identify as asexual or “other” compared to non-autistic people.
In particular, autistic males were more likely to identify as bisexual compared to non-autistic males, while autistic females were more likely to identify as homosexual compared to non-autistic females. Older autistic adults were also more likely to identify as bisexual compared to older non-autistic adults, whereas younger autistic adults are more likely to identify as homosexual compared to non-autistic peers of similar age.
Comparing males and females with autism reveals additional complexity. While there were no significant differences in the average age of sexual activity onset between autistic and non-autistic groups, autistic females report greater sexual diversity than autistic males and were more likely to engage in sexual activity at a younger age (18.02 in females versus 19.44 in males).
Interestingly, these differences do not affect sexual health outcomes. Autistic and non-autistic groups did not differ in their risk of contracting a sexually transmitted infection (STI).
These findings may have important clinical implications for people with autism, particularly relating to sexual health screenings, sexual education and mental health support. Because autistic individuals are more likely to identify as LGBTQA+, they are more vulnerable to inadequate healthcare and worse mental and physical health. Improving sexual education and delivering regular sexual health screenings for autistic adolescents and adults across the spectrum should remain a priority. Practitioners providing these screenings should ensure that they use language that is inclusive of all genders and sexualities and actively support autistic individuals who may be at increased risk of stress and discrimination due to their intersectional identities.
New Texas ABA Medicaid benefit takes effect February 1
January 28, 2022
Effective February 1, 2022, Applied Behavior Analysis (ABA) is a covered benefit for Medicaid enrollees in Texas who have autism spectrum disorder (ASD). This new ABA Medicaid benefit has taken years of advocacy by Autism Speaks and advocates across the state who care about making Texas a better place for those affected by autism.
ABA is the acronym for “Applied Behavior Analysis.” It is an evidence-based behavioral therapy for those with ASD and one of the most common interventions for people with autism. Learn more about ABA.
The path to coverage under Medicaid for ABA services has been long and not without its challenges. On June 15, 2019, Governor Abbott signed the budget bill which included a requirement for Texas Medicaid to cover medically necessary care, including ABA, for all Texas Medicaid-enrolled children. Unfortunately, due to COVID-19, the implementation of coverage for autism services was delayed. During this time Autism Speaks has continued to work toward effective implementation, and we are now happy to share more information about how to access and use the new benefit.
Details about accessing the Medicaid ABA benefit:
- The individual enrolled in Medicaid must be under 21 years old. Currently, CHIP enrollees are not eligible for the benefit. However, Medicaid Buy-In enrollees are eligible. To learn more about Medicaid and the Medicaid Buy-In program, visit here.
- The individual needs to have been diagnosed with ASD within the last 3 years.
- A doctor or other medical professional (for example, a psychologist or nurse practitioner) needs to make a referral (prescribe) ABA for the child.
- ABA providers who are accepting Medicaid clients will be in the online provider directory of the child’s health plan. Search for “licensed behavior analysts” or “autism services.” Check the back of the child’s Medicaid card for plan information.
- Because ABA is a brand-new Medicaid benefit, we expect there may be some hiccups along the way as it is rolled out. We also expect that there will be a shortage of providers who are accepting Medicaid clients. For these and other concerns, please contact the child’s Medicaid service coordinator or the state’s Behavioral Health Ombudsman and ask for help. Texas families have waited so long for this benefit & we want to help the state address any problems as quickly as possible.
Research reveals racial differences in perceptions of autism prior to diagnosis
January 25, 2022
A study published recently in Autism reveals racial differences in the way parents think about autism spectrum disorder (ASD) prior to their child’s diagnosis.
Researchers studied 489 children between ages 1 and 15 at their first ASD evaluation. Participants were 48% white, 23% Black/African American, 10% Asian, 6% Hispanic and 13% multiracial or other.
While all parents came to the evaluation with concerns related to their child’s communication, social and emotional/behavioral challenges, parents of white children were more likely to suspect that their child had autism than parents of multiracial, Black, Hispanic and Asian children.
Further, the results showed that white children whose parents believed they had ASD prior to a diagnosis had less severe symptoms. However, in other racial/ethnic groups, early parent knowledge of ASD was not associated with better outcomes.
These results could reflect disparities in access to medical knowledge and education among minority communities. White parents overall have greater awareness of ASD than people of color, leading to earlier interventions and better outcomes for their children. In contrast, racial/ethnic minority parents are less likely to believe their child has ASD, delaying access to care.
The findings may also imply the existence of structural racism and provider bias in the healthcare system. Racial/ethnic minority children had worse outcomes than white children even when their parents were equally knowledgeable about ASD prior to diagnosis, indicating differences in the quality of care.
Additionally, the research showed racial differences in the types of concerns that led parents to seek out an autism evaluation for their child. Parents of Black and Hispanic children were more likely to have concerns about their child’s communication issues, while parents of white children were more concerned about their child’s emotional/behavioral skills. Hispanic children whose parents reported that their child did not make eye contact or respond to their name were more likely to get an ASD diagnosis and experience severe symptoms.
It is possible that for minority parents, “communication” may serve as an umbrella term that encompasses other ASD symptoms like social skills and cognition. ASD screening and assessment practices should take this into account, paying particular attention to communication concerns among parents in Black and Hispanic communities. Providers who are educating minority families and raising awareness of ASD should also focus on early social communication challenges as a key symptom.