Autism now more common among Black, Hispanic kids in US

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Today, the Centers for Disease Control released the Autism and Developmental Disabilities Monitoring (ADDM) Network report. This report estimates how many autistic 8-year-olds there are in certain areas of the country. The report shows that better recognition of autism and continued efforts to reduce racial and gender disparities have caused rates of diagnosis to continue to rise. However, there is still more work to do to address the remaining disparities in diagnosis, and more work to do to ensure autistic people in all communities receive the support we need.

The report released today uses data gathered in 2020. This research reviewed records of 8-year-old children in 11 communities across the United States. The report released today shows that the rate of autism diagnosis has increased to 1 in 36 children or 2.8 percent of the children surveyed. This is an increase from earlier reports, which estimated that 1 in 44 children were diagnosed with autism.

ASAN is not surprised to see the diagnosis rate increase. We believe this increase reflects better recognition and diagnosis of autism across the U.S. We know that many disparities in diagnosis have become smaller. We know that children were evaluated earlier in some places and later in others, and believe that the differences in rates seen between different ADDM sites reflect that these disparities still exist. We expect that diagnosis rates will continue to rise as we work to address diagnostic disparities and improve access to diagnosis and support.

Looking at 4-year-olds with a diagnosis, the ADDM study also found an increase in the identification of autism by age 2. Improvements in early identification make it even more critical that parents receive accurate, non-stigmatizing information about autism upon diagnosis. It is vital for families to receive information about what types of services are available to autistic kids. Too often, families are pushed towards ABA and other behaviorist approaches to early autism intervention, even though many autistics have found these approaches unhelpful and harmful. As early identification increases, health insurance companies must cover services besides ABA for autism. Our toolkits on health insurance coverage contain more information on how to make that happen.

At the same time, while early identification had continued to improve, these gains primarily occurred before the COVID-19 pandemic. The ADDM study also found that the impact of COVID-19 on screening and identification was substantial and reversed these early trends. Because of the pandemic, people had less access to screenings, services, and supports, which has meant that children have received fewer diagnoses since the start of the pandemic. These children still exist and are still autistic, but it will be even harder to get the support that can help them most. It is essential that we make sure that people are connected to services and supports that they did not have access to during the pandemic.

The report also reflects improvements in identifying and addressing racial disparities in diagnosis. For the first year since the start of the ADDM study, people of color were identified with greater frequency than white people. This likely reflects long-term efforts to reach communities of color and improve access to early identification and services. However, some diagnostic disparities remain and continue to be an issue for autistic people of marginalized races, ethnicities, and genders. As in prior years, the report showed that Black children were more likely also to be diagnosed with an intellectual disability compared to white or Hispanic children, reflecting a longstanding history of racism in how Black children with disabilities are labeled. In addition, children assigned female at birth were less likely to be diagnosed than children assigned male at birth. Researchers, clinicians, and policymakers must continue to work to end these disparities and remove bias from the diagnostic process.

ASAN has previously noted the importance of providing additional data on older autistic populations. Earlier this year, for the first time, the ADDM study has included information about teenagers up to the age of 16 for five of their locations, including information on their diagnoses, support needs, and transition planning for adulthood. ASAN welcomes these efforts to follow and understand the experiences of autistic individuals across the lifespan and through adulthood; this information is crucial to demonstrating that we are still here throughout adulthood, and understanding our support needs as we age. It is also important for understanding the experiences of those who are diagnosed later in life; 11.6% — more than 1 out of 9 — of people identified in this older study group were diagnosed after age 8.

The ADDM report indicates that our diagnosis practices are starting to reflect the diversity of the autistic community. While the challenges posed by COVID remind us that we will continue to need to work to improve access, it is good news that many autistic people who have been overlooked in the past can increasingly get the recognition and support they need.

Many factors are likely to contribute to these rising rates, including that diagnoses among children of color have been catching up to – and are now passing – white children.

With conditions that require a complicated diagnostic process, it's typical for less advantaged children to lag behind, so the increase suggests more children of color are now getting the help they need, said Andy Shih, chief science officer of Autism Speaks, an advocacy group.

"This increase is really fueled by us doing a much better job in identifying minority children with autism," Shih said.

But Walter Zahorodny, an author on the paper, said he thinks there's more going on than just better identification.

"No one really knows what's driving autism rates higher," said Zahorodny, also director of the New Jersey Autism Study and an associate professor at Rutgers University.

For years, people have pinned rising rates on a variety of causes, including improved awareness, reduced stigma, re-labeling of kids, aging parents, low-birth-weight babies or C-section deliveries. Though they all may contribute, Zahorodny thinks something else from our contemporary environment is driving the rates.

"This is a true increase," he said. "It constitutes a major public health crisis."

Traditionally "Public health crises" meant something caused by germs or a virus or in the case of depression a chemical imbalance for depression. While there is a lot to be learned about autism what is known is that causation is mostly genetic. Innate traits have traditionally not been labeled as public health crises. So most Autisms are probably not Public health crises in the traditional sense.

Actually, no one really knows for sure what causes autism. Even 16p11.2 deletion syndrome, the most well known copy-number variant associated with autism, only has about 30% qualify for an ASD diagnosis.(https://pubmed.ncbi.nlm.nih.gov/20613623/).

According to this twin study (https://jamanetwork.com/journals/jamapsychiatry/fullarticle/1107328), more than 50% of ASD cases can be explained by environmental factors.

What is known is that autism is caused by a complex interplay between genes and environment. For details of some of these environmental factors, look at https://www.frontiersin.org/articles/10.3389/fnins.2016.00174/full.

Of these, parental obesity and air pollution has some evidence of increasing risk of ASD. Obesity is on the rise in the US (https://en.wikipedia.org/wiki/Obesity_in_the_United_States#/media/File:Obesity_in_the_United_States.svg) and wildfires have burned more land over the years (https://www.epa.gov/system/files/images/2022-07/wildfires_figure2_2022.png).

Paternal age is also a factor (https://www.spectrumnews.org/news/link-parental-age-autism-explained/) and it has been trending upward as well (https://academic.oup.com/humrep/article/32/10/2110/4096427).

It is kinda early to say that it's not a public health crisis.

It is kinda early to say it is a public health crisis as the author of the study did. While Zahorodny did not say what that "something else" is I have an idea how it will be taken, vaccines or some other intentionally introduced poison which is not good for us. That is why I think it was irresponsible for Zahorodny to speculate. You or I can speculate that there is something else going on but an authoritative person should not be saying that.

Not sure what you think he should have said instead. If an authoritative person cannot state his opinion because some crazies on the internet might take it the wrong way, then who can?

New Jersey’s rate of 8-year-olds diagnosed with autism spectrum disorder is the third highest in the nation

New federal studies coauthored by autism experts at Rutgers found that more children have been diagnosed with autism than at any time since monitoring began more than two decades ago.

According to the U.S. Centers for Disease Control and Prevention (CDC), about 4 percent of 8-year-old boys and 1 percent of 8-year-old girls in the U.S. have autism. These estimates are the highest since the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network was created in 2000.

Biennial studies from the ADDM Network, which analyzed data from 2020, were coauthored by Walter Zahorodny, director of the New Jersey Autism Study at the Rutgers New Jersey Medical School, and Josephine Shenouda, a Rutgers epidemiologist.

The first study, the CDC’s 2020 autism prevalence report, found that California set new records, diagnosing 45 percent more boys with autism than any other state in the network. Nearly 7 percent of all 8-year-old boys in the San Diego region are estimated to have autism spectrum disorder (ASD), according to the report.

In New Jersey, the combined rate of 8-year-old boys and girls with ASD was 28.7 per 1,000 children (2.9 percent), the third highest behind Minnesota (3 percent) and California (4.5 percent).

Maryland recorded the lowest rate (2.3 percent) across the 11 states in the network (which includes Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah and Wisconsin).

“For California in particular, the data are surprising and represent the highest autism prevalence estimates from a region by an epidemiologic study,” Zahorodny said.

There may be several reasons for the disparity between California’s numbers and the rest of the country, he said. For one, California’s figures were drawn from an area in metro San Diego that is leading national efforts to diagnose autism as early as possible, translating into more accurate – and higher – numbers than other states.

State-funded centers also provide evaluations and service coordination for children with disabilities and their families. Other states may be undercounting because they don’t have as many diagnostic resources, he said.

“The true rate may not be substantially different between California and other ADDM states, including New Jersey,” Zahorodny said. “What’s different is that California implemented some wide-ranging screening and intervention programs, which may have resulted in a higher estimated prevalence than elsewhere in the network.”

California also outpaced all other states in the 2018 study, recording an overall prevalence of 38.9 per 1,000 children. The state was not included in the 2016 study.

Zahorodny said other states should consider expanding screening programs to echo what California has done. “Consistent universal screening of young children coordinated through multiple pediatric practices may be the way to make a difference in autism detection and intervention,” he said.

A companion 2020 report, which estimated early identification of autism in 4-year-old children, found similar patterns and trends. Total prevalence in this age group increased 26 percent compared with 2018 results – to 2.1 percent of children. But the rates varied widely and were 265 percent higher in California than in Utah, the state with the lowest prevalence.

More difficult to ascertain is why ASD prevalence continues to climb. While there are known risk factors for autism, including age of parents, multiple-gestation birth, prematurity, C-section delivery and care in the intensive care unit after delivery, these perinatal factors have remained relatively stable even as the rate of ASD has continued to surge.

A common misconception is that better awareness and more availability of services is largely responsible for the rise, but Zahorodny said this was “impossible” because the scope and breadth of increase has been extensive across all subtypes of ASD, from mild to severe, and across all demographic groups.

“This is not just a phenomenon of becoming more sensitive to subtly impaired kids,” he said.

Among other highlights from the reports:

-For the first time among 8-year-old children, the prevalence of ASD was lower among white children than among other racial and ethnic groups, reversing the direction of racial and ethnic differences in ASD prevalence observed in the past.
-Black 8-year-old children with ASD were more likely than white children with ASD to have a co-occurring intellectual disability.
-Over the past two decades, ASD prevalence estimates of 8-year-old children from the ADDM Network have increased sharply, from 0.6 percent in 2000 to 2.2 percent in 2018.
-Among 4-year-olds, ASD prevalence in 2020 ranged from 1.2 percent of children in Utah to 4.6 percent in California, with an overall prevalence of 2.1 percent.

“Once considered a rare disorder, these figures suggest that autism may be one of the most common disabilities,” Zahorodny said. “The trouble is we don't understand what the primary drivers of the increase are.”

A common misconception is that better awareness and more availability of services is largely responsible for the rise, but Zahorodny says this was “impossible” because the scope and breadth of increase has been extensive across all subtypes of ASD, from mild to severe and across all demographic groups.

“This is not just a phenomenon of becoming more sensitive to subtly impaired kids,” he says.

But Walter Zahorodny, an author on the paper, said he thinks there's more going on than just better identification.

"No one really knows what's driving autism rates higher," said Zahorodny, also director of the New Jersey Autism Study and an associate professor at Rutgers University.

For years, people have pinned rising rates on a variety of causes, including improved awareness, reduced stigma, re-labeling of kids, aging parents, low-birth-weight babies or C-section deliveries. Though they all may contribute, Zahorodny thinks something else from our contemporary environment is driving the rates.

On Thursday, the Centers for Disease Control and Prevention announced another increase in the prevalence of autism among children. In a pair of new reports — one focused on 8-year-olds and one on 4-year-olds — the CDC found that 1 out of every 36 children has autism. This is a significant increase from the 2021 estimate of 1 in 44, which was a big jump from 1 in 110 in 2006.

This increase may sound scary. But as autistic adults and as parents of children with autism, we advise you to relax. There is no “epidemic of autism.” Instead, what we face is an epidemic of need.

The main reason we are finding more autism is simple: Clinicians are getting better at spotting what was always there. There is no simple test for autism, so diagnosing it requires substantial training in observational techniques. As a result, diagnosis can vary significantly depending on the population and the competence of clinicians. The CDC reports significant variations in autism rates from state to state and even from one school district to another. Yet there is little biological evidence to explain this. In another example of the variation, prior reports found more autism in white children.

In the new reports, the balance has shifted, with increasing identification among people of color. We see that as an improvement, but we’ve still got a way to go, particularly when it comes to diagnosing autism in girls and women, in people with less visible symptoms, and others. The new CDC report finds a 4-to-1 ratio of male-female diagnoses. But we are skeptical of that number, which has barely changed over the past decade, even as overall prevalence has risen. In our academic work, we find that autistic female students often outnumber autistic male students in college groups. One of us, (D. G.), is a social worker and notes that women in adult settings often come to diagnosis later in life, frequently as mothers and grandmothers. This suggests many females still escape childhood diagnosis today.

Adults tend to compare autistic women with autistic men. But when it comes to their nuanced expressions of autism, it’s more useful to compare autistic women with non-autistic women. We suspect something similar happens with children, leading to an ongoing failure to spot girls with autism. Throughout recent history, every time we’ve heard of a population group that “has no autism,” studies have ultimately revealed it, hidden by cultural factors, and overlooked by diagnosticians.

Identifying autism may seem easiest in autistics with the highest support needs — who have externalizing expressions of autism — but diagnostic errors still happen. Sometimes co-occurring ADHD, anxiety, learning disabilities, or even effects of medications for epilepsy and behavior can drive IQ scores down, suggesting intellectual disability that is not present. This may result in a child being placed in a more segregated school setting, facing lower expectations, and being denied opportunities for learning.

Other autistic people have a more internalizing presentation of autism. They might seem “quiet and shy” rather than “abnormal or disabled.” Their autisms are hard to spot, so clinicians may seize the most obviously presenting feature (such as anxiety or attention issues) and fail to dig deeper to uncover the constellation of combined features that point to autism. This is a recurring problem: When attentional issues, obsessive-compulsive disorder, depression, self-harm, eating challenges, anxiety, and other co-occurring conditions are compartmentally diagnosed, the framework for support remains incomplete. People can end up isolated, disconnected from the neuro-inclusive community who can aid them in the liminal journey of reintegrating their identity. They may be medicated or treated in ways that are not helpful. Similar maltreatment can occur when autistic people present with intersectional gender minority differences.

Better understanding also helps us recognize where our current diagnostic regimens are failing us. Too many marginalized people go undiagnosed thanks to screening tools that are less effective for people of color, those with gender minority identities, and some with cultural differences. As tools and expertise improve, diagnoses will continue rising.

This is critical, because unsupported autism contributes to homelessness, abuse, self-harm, and other preventable damage. The more autism we recognize, the more people we can help.

Most autistics report bullying not only from students but also from therapists and educators. It should not surprise anyone that autistics have poor graduation rates. In adulthood, autistics face under/unemployment and inadequate assistance from rehabilitation agencies. Many autistics of color end up in the school-to-prison pipeline instead of receiving an appropriate diagnosis and the ensuing understanding and essential services. Adults live under pressure to conform to a world that they may not understand, and that does not understand them.

Even with proper diagnosis, anxiety, depression, and suicidal ideation are constant threats. In the medical domain, autistic people are more likely to experience unrelieved suffering from intestinal distress, epilepsy, and other conditions. Sometimes this is a result of communication barriers, whether because someone is nonspeaking or is unable to make consistent use of language. Other autistic vulnerabilities have genetic or idiopathic causes. Whatever the reasons, too many autistics die early from preventable causes.

Autism does not go away, as evidenced by the numbers of adults now getting diagnosed in their 50s, 60s, and 70s. In fact, the most successful autistics (by neurotypical standards) succeed not by outgrowing their condition but by growing into it and learning to use strategies to achieve. But even those who navigate by learned strategies often do so at great costs. For example, many environments encourage masking (the practice of hiding one’s autism) despite research demonstrating the harm that occurs when autistic persons cannot live authentically. Autistics may be unaware of their potential, suffer needlessly, and be unable to attain their personal life goals.

There are supports out there, like vocational rehabilitation, Social Security, and food stamps — but executive functioning disabilities can make them inaccessible to autistic adults. There’s no single application for support; each exists in its own silo. It’s as if the systems combined to create a panopticon of rules, waiting to pounce on unknowing, inexperienced users. We need better systems with easier — or better still, supported — access that considers the limitations an applicant may face.

Despite the importance of a diagnosis, supports work better when focused on needs. Many people assume that services are necessary only for those with the highest, most observable support needs. In reality, functional limitations exist for all autistic persons, and those needs should determine services. Some autistics will need 24/7 support with access to qualified personnel, who must be trained and paid a living wage to provide consistent care. For others, 10 hours a week of in-home support may promote enhanced wellness and balance, so they can return to or enter the workplace. Care should be available as needed, with individual variances in intensity and frequency. Flexibility is essential because living with autism is a dynamic process. Lifetime supports should allow people to flow in and out, as life changes happen.

Too often, autistic adults without the benefit of privileged family live in squalor, at risk of abuse and neglect. Some are institutionalized against their wishes. Anyone taking social services funding is forced into penury, with income capped below the poverty level; their benefits are constantly under restriction, and they endure an unending burden of proof to keep their supports.

This leaves most autistic people and their families ineffectively supported. The implications of this failure are everywhere. In the quest to help their kids, parents (usually mothers) sacrifice their careers and identities, becoming systems navigators for their beloveds. Not everyone has the capacity to learn the systems or can afford to leave their job to become a full-time caretaker.

In the face of these desperate needs, it’s time for our community to stand strong and advocate for the services needed for ourselves and families. Wealth, race, or cognitive/educational privilege should not be the deciding factor predicting who survives and prospers in living an autistic life. The rising autism numbers presented by our CDC should be a wake-up call — there are a lot of us, and what’s truly increasing is the cost of ignoring our needs. It is high for us as individuals and for families — and even higher for society

The main reason we are finding more autism is simple: Clinicians are getting better at spotting what was always there.

The title of the thread doesn't really make much sense.

Why would autism be missed in ethnic minorities, do black kids not go to the same schools or go to the same doctors as white kids in the US?

Is this implying ethnic minority parents often don't bother investigating their child`s medical issues?, does it cost money to have a child diagnosed in the US and those from poorer backgrounds cant afford this?

If that's speculation then this would be speculation as well:

There is no epidemic of autism. It’s an epidemic of need



Specifically:



Except that this speculation/opinion isn't qualified by a "I think" but is presented as fact.