Diagnosing Autism During the Pandemic Is Hard

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. 

Perri Klass, M.D. at NYT:

Dr. Heidi Feldman, a professor of developmental and behavioral pediatrics at Stanford University School of Medicine, said ... that first-time parents who have been operating in the increased isolation of the pandemic may have very limited context for appreciating where their child’s behavior falls. They’re missing the input they might usually get from teachers and child care providers.

 Dr. Eileen Costello, a clinical professor of pediatrics at Boston University School of Medicine and chief of ambulatory pediatrics at Boston Medical Center, said, “Especially for the really little ones, the only eyes that are on them are their parents’. They’re not seeing uncles and aunts and cousins, not in preschool.”

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Catherine Lord, a professor of psychiatry and education at the University of California, Los Angeles, said, “I’m doing diagnoses right now in my back yard, which is insane.” But with the protective gear that would have to be worn at the hospital, she said, “we look like we’re from outer space,” and could be too intimidating to small children.

Dr. Lord said. “We do remote interviews with parents, we try to see videos of the kid, then have them come — we have a big back yard.” And they continue to use the Zoom technology, even across the yard.

The standardized assessment for autism spectrum disorder can’t be done masked, because it depends on interpreting the child’s expressions and observing reactions to the examiner’s facial expressions. Dr. Lord said there is a shorter version that children can do with their parents — everyone unmasked — while the clinicians watch without being in the room. This may not be as accurate — researchers are still analyzing the data — but they are hopeful that it will be helpful in many cases. 

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Dr. Lord was the lead author on a review paper on autism spectrum disorder published in Nature Reviews in 2020. She emphasized the importance of early diagnosis so that children can get early help with communication: “Kids who are going to become fluent speakers, their language starts to change between 2 and 3, and 3 and 4, and 4 and 5,” Dr. Lord said. “We want to be sure we optimize what happens in those years and that’s very hard to do if people are stuck at home.”

Dr. Adiaha Spinks-Franklin, a developmental behavioral pediatrician at Texas Children’s Hospital and an associate professor at Baylor College of Medicine, notes that the pandemic worsens inequalities. Poor families may not have access to high-speed internet and -- as always -- have trouble accessing providers.

“Now, she said, the pandemic is placing those families even more at risk, because of the likelihood of economic hardship from jobs loss, underemployment or lost health care benefits. The disparities are exacerbated, and the chance of getting to the right clinic and the right health care professional go down.

Right now, because families are isolated or may not have good access to medical care, neurodevelopmental problems may be being missed in these critical early years, when getting diagnosed would help children get therapy. On the other hand, some children who don’t have these underlying problems and are just reacting to the strange and often anxiety-provoking circumstances of pandemic life may mistakenly be thought to be showing signs of autism.

Domestic Terrorism

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong.

Dr. Richard Pan, a California state senator, writes at WP:

[In] Los Angeles on Jan. 30 ... a mob of anti-vaccine protesters stormed Dodger Stadium, one of the nation’s largest vaccination centers. These extremists succeeded in temporarily shutting down the site, delaying patients, many of them elderly, from getting their shots. The anti-vaccine activists have told the Los Angeles Times that they intend to keep disrupting vaccination efforts.

This campaign to deny potentially lifesaving vaccines to those seeking them, and to poison public opinion against vaccinations, could result in countless American deaths. That is akin to domestic terrorism.

Public health officials, police and fire departments must join hands with a common goal of securing vaccination sites for patients. But, like the virus itself, anti-vaccine extremists are crafty at finding new ways to threaten people. Disruptions are possible anywhere vaccinations are being administered, at sites large and small — even at pharmacies, just as anti-maskers have harassed employees and customers at stores.

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A troubling thought is that both the social media companies and the extremists have a financial interest in continuing as before. Coordinated attacks on the truth by anti-vaccine propagandists are the best advertising for the alternative remedies and magical supplements that many anti-vaccine leaders sell to their followers.

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Taking concerted steps to counter the coronavirus anti-vaccine movement has already resulted in violent threats being hurled at me and my legislative colleagues as recently as Thursday. Last month, an anti-vaccine extremist shouted from the Senate gallery, “We didn’t buy guns for nothing.” But that should not deter anyone who’s interested in fighting the pandemic from championing evidence-based policies.

City News Service update: 

Dozens of people not wearing masks protested the COVID-19 vaccine at the entrance to Dodger Stadium this afternoon as people in cars steadily drove through to keep appointments at the county's largest vaccination site.

Unlike last month's anti-vaccination protest at the stadium, today's did not appear to interfere with the vaccination operations.

Signs read: "929 Deaths After Vaccination in the USA," and "This Is Not a Normal Vaccine," according to video from the scene posted on Twitter by Cal State Northridge student journalist Emily Holshouser at about 2 p.m.

Antivaxxers Threaten Black Doctors

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong.

Kaylin Dodson at Vice:

Earlier this month, Bloomberg reported that Black doctors are often working double duty, treating patients during the day and combatting misinformation on Clubhouse at night. Some of the doctors that have done this tell Motherboard that they have been harassed and threatened by vaccine skeptics and their followers.

Much of this has centered around Chakabars Clarke, an entrepreneur, wellness influencer, and anti-vaxxer with a million Instagram followers moderated a room on Clubhouse where he questioned the validity of vaccine information being presented by “mainly Europeans.” Clarke has 15,600 followers on Clubhouse and his rooms regularly reach upwards of a thousand audience members.

Like most viral rooms on Clubhouse, the conversation spilled over to Twitter, where users have condemned Clarke.

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Black doctors who have spent time debunking antivax conspiracy theories say they have been threatened by some of Clarke's followers, which has become a major topic of conversation among people in these rooms and became a broader discussion on Twitter, with comedian Tiffany Haddish defending Clarke.

Clarke did not respond to a request for comment from Motherboard, but told Insider that he denied "spreading information about the vaccine." At one point, Clarke was temporarily suspended from Clubhouse.

Ending Discrimination in Organ Transplantation

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities.   A number of posts have provided details on discrimination in organ transplantation.

A release from Rep. Jaime Herrera Beutler:

U.S. Representatives Jaime Herrera Beutler (WA-03) and Katie Porter (CA-45) today reintroduced the Charlotte Woodward Organ Transplant Discrimination Prevention Act, which will prohibit using an individual’s mental or physical disability as the sole basis of determining their eligibility for an organ transplant.

The bill, named after Charlotte Woodward, an advocate fighting against discrimination who has Down syndrome and received a heart transplant in 2012, clarifies that doctors, hospitals, transplant centers and other health care providers are prohibited from denying access to organ transplants solely based on a qualified individual’s disability.

“If an individual needs access to a life-saving organ transplant, they shouldn’t be denied based on their disability – either physical or mental,” Herrera Beutler said. “I’m proud to reintroduce this important legislation today named after Charlotte Woodward, a relentless advocate against discrimination who has Down syndrome, to help ensure people with disabilities receive the same treatment and access to life-saving organ transplants.”

“A patient’s disability status shouldn’t stop them from getting the care they need, including a lifesaving organ transplant,” Porter said. “I’m proud to renew my push with Congresswoman Herrera Beutler to prevent discrimination against Americans with disabilities in getting necessary transplants. Discrimination has no place in our healthcare system.”

“As one of the very few people in the world with Down syndrome who has had the opportunity to receive a lifesaving heart transplant, I am so very, very grateful that people with disabilities will have the same opportunity as I in the future,” Charlotte Woodward said. “In the past, too many precious lives were lost due to discrimination in organ transplantation. I am so very, very thankful for the generosity of my heart donor and that of her loving family. Her gift has allowed me to live my life to the fullest and to go on to advocate for others to be able to do the same. The passage of this bill will be a monumental step towards a more just world, and I am proud to play a part in it.”

Herrera Beutler and Porter previously introduced this legislation in the 116th Congress.

Diagnosing and Measuring Autism Across Countries

In The Politics of Autism, I discuss international perspectives.  Diagnosis depends on observation of behavior.  There are multiple problems with this approach, including cultural differences.

Moreover, the definition of behavioral symptoms rests on Western – and specifically American – expectations about the behavior of children and adults. But what is “autistic” in this context may be “normal” in another. In rural South Africa, for instance, young children avoid direct eye contact with adults because their culture considers it disrespectful.

At The Journal of Autism and Developmental Disorders, Nicole E. Rosen, Catherine Lord & Fred R. Volkmar have an article titled "The Diagnosis of Autism: From Kanner to DSM-III to DSM-5 and Beyond."

Cultural context is a crucial consideration in the diagnostic process, both in accurately assessing for ASD and in understanding the implications of a diagnosis (Freeth et al. 2014). While standardized instruments allow for reliable diagnoses of ASD across countries (Marlow et al. 2019) and diverse populations (Harrison et al. 2017), clinicians must conduct assessments and interpret results within the cultural framework of the individuals they assess. Within some Asian cultures, for example, index finger pointing to express interest is not a common overture, and thus an absence of this skill during an autism assessment may not be coded by a clinician as a behavioral symptom common to ASD (Zhang et al. 2006). Additionally, in South Africa, for example, some children are taught to avoid playing with amphibians and reptiles as safety precautions. Thus, when administering the Afrikaans ADOS or other versions of the ADOS to children who are uncomfortable playing with frogs (which happens in many places), clinicians may elect to use a toy car in place of the toy frog during the “functional and symbolic imitation task” as a culturally sensitive adaptation (Smith et al. 2017).

Similarly, as Freeth et al. (2014) note, issues such as regulation of eye contact and language differences across cultures might impact usual Western-oriented assessments. For example, in one study of Spanish-speaking families in the U.S. (Vanegas et al. 2016), potential issues were noted in the sensitivity and specificity of diagnostic instruments when parents and children experienced language discordance resulting in Spanish-speaking parents underreporting communication impairment in their English-speaking children. Issues relative to the use of screening instruments in various cultures and across multiple countries have also been noted (Dai et al. 2020; Havdahl et al. 2017; Khowaja et al. 2015; Kimple et al. 2014; Rea et al. 2019; Surén et al. 2019; Windham et al. 2014), and, together with the considerations in assessment, highlight the importance of the clinician’s interpretation of behaviors in the context of what would be socially appropriate relative to culture.

The cultural context in which an individual receives an ASD diagnosis is also important, as it may foster acceptance and access to services (common in the U.S.), or it may be associated with stigma for the individual and the family as a whole. In some African cultures, for example, individuals with ASD and their families are stigmatized because of the belief that ASD results from witchcraft (Gona et al. 2015). Furthermore, among cultures that stigmatize disabilities more generally, an ASD diagnosis in the family can also negatively affect the marriage prospects of siblings and the future of the family given the genetic liability (Divan et al. 2012). Across East Asia, the Middle East, and Western societies, a recent review suggested a strong negative impact of ASD stigma on some caregivers resulting in attempts to hide their circumstances (sometimes the child with ASD as well) to avoid rejection from the community (Papadopoulos et al. 2019). Taken together, while little variation in ASD prevalence between cultures has been reported (Elsabbagh et al. 2012), the above studies highlight the importance of navigating the diagnostic process through a cultural lens.
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While a recent global burden study reported that 95% of all young children with developmental disabilities live in low and middle income countries (Olusanya et al. 2018), the majority remain undiagnosed (Sun et al. 2019). Furthermore, relatively little research originates from these countries, which results in their underrepresentation in the broader ASD literature (Franz et al. 2017). The low diagnostic rates in poor countries likely stem from the lack of dedicated infrastructure to assist people with ASD (Minhas et al. 2015; Tekola et al. 2016), difficulty obtaining referrals to meet with the limited number of specialists (de Vries 2016; Elsabbagh et al. 2012), and low levels of parental literacy that limit a parent’s ability to understand the disorder and to locate services (de Vries 2016; Samadi and McConkey 2011). Families are often forced to manage the care of an individual with ASD on their own, which often involves enlisting the help of extended family and community members (Divan et al. 2012). Among the lucky families who find an available and appropriate assessment center, the target children may be brought to the clinic by non-parent adults, which limits the quality and quantity of relevant developmental information that can be shared with the specialist. Thus, given the numerous barriers to assessment, the children who ultimately receive ASD diagnoses are often the children with the most significant impairments and complex phenotypic profiles (Kommu et al. 2017).

Pandemic Litigation

In The Politics of Autism, I write about IEPs and FAPE. The Supreme Court ruled in Endrew F. v. Douglas County School District that the Individuals with Disabilities Education Act (IDEA) requires public schools to provide heightened educational benefits to students with disabilities.

Parents usually lose in due process hearings.

COVID is a new source of conflict.  Providing education is proving to be very difficult.

Bianca Quilantan at Politico Education:

Special education is the most active area of litigation for school districts, according to education groups. About 29 percent of schools were “worried that special education litigation would consume much of their time and resources in the 2020-21 school year,” a survey from the Association of Educational Service Agencies found.

— But the number of complaints filed is actually down during the pandemic, said Lehigh University professor emeritus Perry Zirkel, who has been analyzing the complaints.

— State complaint decisions and due process hearing decisions have been increasingly rolling out. In his summary of the decisions, Zirkel found that parents are largely looking for two forms of relief: compensatory education and fixing the problem for the future. But “we find that overall, districts win about twice as many cases as parents,” he said.

— So far, the majority of cases have resulted in corrective action, Zirkel said, and many due process hearing decisions have ordered specific and direct compensatory education or reimbursement to cover in-person private arrangements. The general pattern is that “both complaint investigators and hearing officers say [free appropriate public education] does apply, but they vary in their strictness,” he said.

IDEA Data

 In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act. 

The Department of Education has released the 42nd Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act, 2020.

• Between fall 2009 and fall 2018, the share of students ages 6 through 21 served under IDEA, Part B, who were reported under the category of autism increased from 5.7 percent to 10.5 percent.  (p. 138).  
• The 2018 percentages ranged from 1.1 to 15.1 percent in the individual States. In the following nine States, 12 percent or more of the students served were reported under the category of autism: Minnesota (15.1 percent), California (13.9 percent), Virginia (13.2 percent), Nevada (13.1 percent), Texas (13.0 percent), Oregon (12.6 percent), Connecticut (12.4 percent), Maryland (12.0 percent), and Massachusetts (12.0 percent). In contrast, less than 6 percent of the students served in the following four States were reported under the category of autism: Puerto Rico (5.5 percent), Montana (5.1 percent), Bureau of Indian Education schools (4.4 percent), and Iowa (1.1 percent). (p. 139)