Education Research Cuts

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

According to the National Center for Education Statistics, 7.5 million children 3 to 21 years old received services under the Individuals with Disabilities Education Act in AY 2022-23.

About 980,000 of them were autistic, up from 498,000 in 2012-13.

The Trump administration is halving the staff of the Department of Education.

Lexi Lonas Cochran at The Hill:

The educational research community is looking to pick up the pieces after the Trump administration has canceled dozens of studies and ended hundreds of jobs.

In line with the Department of Government Efficiency (DOGE), hundreds of federal contracts have been canceled with education research groups, accused by the administration of either being useless or simply too “woke.” Longitudinal studies on early childhood education and artificial intelligence literacy are among those that have taken significant hits.

...

“We’ve had a number of projects canceled, including some very long-standing research projects, namely the Regional Education Labs that WestEd has been part of for almost its entire history, so 59 years,” said Jannelle Kubinec, CEO of WestEd, adding studies relating to reading, chronic absenteeism and math and numeracy have also been terminated.

...

“Across the board, we’re really talking about a complete capacity downsize. It’s people, it’s money, it’s spaces, it’s resources. So, it’s definitely a lot all at once […] Outside of contract cancelations and risk, a lot of the harm is yet to come,” said Jinann Bitar, higher education research and data analytics at EdTrust.

Along with interruptions in longer studies, the turbulence in the field has led to hesitation in researchers wanting to start a career in this area, as there are few safe spaces for the studies left.

“This is going to be gut-stopping for current researchers, but it’s actually going to be almost impossible to overcome for early-career researchers if they don’t have anywhere stable to be in the meantime on their research,” said Bitar.

Trump Slashes Autism Research

 In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign, a number of posts discussed Trump's bad record on disability issues more generally.   As his words and actions have shown, he despises Americans with disabilities.   

To lead a "study" of autism causation, RFK Jr. has named an antivaxxer who is neither a scientist nor a physician.  Meanwhile, the administration is slashing actual autism research.

Alana Samuels at Time:

“Funding for autism research is actually disappearing at a time when we see the director of HHS talking a lot about autism as though they think it is important,” says Micheal Paige Sandbank, an autism researcher at the University of North Carolina at Chapel Hill. “Behind the scenes, they are taking a hammer to the whole apparatus for autism research.”

...

A big funder of autism research has historically been the DOE’s Institute of Education Sciences, says Sandbank. But the institute, which has a budget of $800 million, was gutted in the Trump Administration’s layoffs, with only a skeleton staff remaining. Autism research at the institute focused on developing and evaluating school-based interventions to improve outcomes for students with autism.

...

Another canceled grant from the NSF funded autism programs in schools and universities. The Frist Center for Autism and Innovation at Vanderbilt University lost $7.7 million in funding because its grant application, which was initially approved, included the terms “inclusion” and “accessibility,” according to Jessica Schonhut-Stasik, who runs communications for the Frist Center and was also a student in the program. The program offered grants for neurodivergent students or people studying neurodivergent students, says Schonhut-Stasik. The grant also sponsored a summer summit for autistic students, says Schonhut-Stasik, who is herself autistic. “This is just so deeply sad,” she says. “To be given this money, to be told, ‘Here is the money to pursue your dreams,’ is just so big for any autistic person,” she says.

...DOD also funded a lot of autism research, Sandbank says, but a reorganization there has left future projects in jeopardy. The DOD funding was through something called Congressionally Directed Medical Research Programs. In each of the last five years, the Autism Research Program under that bucket has received $15 million dollars, according to DOD press releases. The DOD studies autism in part because it affects children of military families.

In 2025, though, a number of the same research programs received funding as they had in the past, including breast cancer research. But autism was not among the programs listed to receive funding in 2025 announcements. Because autism is not included, Sandbank, who was going to submit a grant for this funding, no longer plans to, she says.
...
NIH is also a huge funder of autism research. But shifting priorities there have ended or delayed some of these projects, says David Mandell, a professor of psychiatry at the University of Pennsylvania who studies autism. The Trump Administration has begun to review and cancel grants that have what it deems diversity, equity, or inclusion terms in them because of a Trump executive order seeking to end what it called “radical and wasteful government DEI programs and preferencing.” Grant applicants are being told, Mandell says, that their research no longer meets “agency priorities.” One public HHS document shows at least two autism grants canceled in the sweep: a project looking at biomarkers of late autism diagnosis in female and gender-diverse people, and one preventing suicide among autistic adults.

Trump v. People with Disabilities

 In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign, a number of posts discussed Trump's bad record on disability issues more generally.   As his words and actions have shown, he despises Americans with disabilities.   

April Rubin and  Maya Goldman at Axios:

People with disabilities say President Trump's DEI purge is eroding health care, education and legal protections they've only won in recent decades.

Why it matters: The Trump administration has taken actions that undermine accessibility measures — critical for leveling the playing field for people with disabilities — as part of its efforts targeting diversity, equity, and inclusion efforts."It's very clear that there is an orchestrated attack by conservatives to dismantle the rights of people with disabilities," said Shawn Murinko, a Washington resident who has cerebral palsy.

State of play: Trump last month ordered an end to all federal programs that mandate or invoke accessibility, alongside diversity, equity and inclusion.The Department of Justice said it will penalize programs that promote accessibility.

Trump has pledged to close the Department of Education, which enforces protections for students with disabilities in school.

Meanwhile, Food and Drug Administration officials said the word "disabled" was banned from external communications, though the White House later claimed that was an error.

Cuts to National Institutes of Health funding also threaten existing and future disability research.

The federal government is one of the largest employers for people with disabilities, but return-to-office mandates could force some out of their jobs.

Rachel Zamzow at The Transmitter:

For Cara Pugliese, the email came at 4:54 p.m. on Saturday, 15 February. According to a Facebook post that Pugliese published on 18 February, her employer, the U.S. National Institute of Mental Health (NIMH), wrote that she was “not fit for continued employment because your ability, knowledge, and skills do not fit the Agency’s current needs, and your performance has not been adequate to justify further employment at the Agency.”

Pugliese was chief of the Autism, Attention-Deficit/Hyperactivity Disorder, and Externalizing Disorders Interventions Research program. Her abrupt termination is “ridiculous,” says Laura Anthony, professor of psychiatry at the University of Colorado Anschutz Medical Campus, who has mentored and worked with Pugliese since 2013. “She’s such an amazing scientist, and creative and working hard to get interventions out to where kids and families are who need them,” adds Anthony, who has corresponded with Pugliese since receiving the news of her layoff. “She has been a superstar [at the NIMH] as well.”

Pugliese joins what is now reported as 1,165 National Institutes of Health employees cut from the agency since 14 February. The layoffs mostly targeted probationary employees, including Pugliese, who had held her position for 344 days—just 21 days shy of completing her one-year probationary period, according to her 18 February Facebook post, which has been shared more than 26,000 times. (Representatives at the NIMH have not responded to The Transmitter’s email and phone requests for comment.)

The Need for Research Beyond the West

In The Politics of Autism, I discuss international perspectives. I also discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.

Petrus de Vries at The Transmitter:

Almost everything we know about autism comes from a handful of WEIRD (Western, educated, industrialized, rich and democratic) countries in the so-called “global north,” yet most autistic people live in low- and middle-income countries (LMICs) around the globe that are quite different from these predominantly English-speaking nations. In a review conducted in 2017, my colleagues and I discovered that less than 1 percent of all autism research to date was performed in Africa, a continent that is predicted by UNICEF to be the home of more than 40 percent of the world’s children by 2050. At the service level, the majority of people in LMICs receive no diagnoses or supports, and in the few—typically urban—areas that can offer services, families often have to pay out of their own pocket. Finding strategies to meet the needs of autistic people and their families in LMICs is therefore fast approaching critical levels.

Scientists have made some progress toward diversifying autism research in high-income countries, by setting up initiatives to increase the diversity, equity and inclusion of the researchers, organizations and communities involved. My colleagues and I acknowledge those efforts. But unless autism research becomes diverse and global at the same time, we will retain the “knowledge gap” between the high-income/English-speaking nations and the rest of the world.

The International Society for Autism Research (INSAR) annual meeting begins tomorrow in Melbourne, Australia. Having this meeting in Australia, rather than in the U.S. or Europe as has previously been the case, is a values-based action intended to make it easier for researchers, clinicians and advocates from the Western Pacific Region to participate. The program deliberately includes panels and special-interest groups on the perspectives and needs of Indigenous, minority and other marginalized groups across the Western Pacific Region. Discussions are also slated to include the research priorities of diverse communities across the globe.

Health Disparity

 In The Politics of Autism, I discuss research priorities.

From Disability Rights Education & Defense Fund (other signers include Autism Speaks, the Autism Society, and the Autistic Self Advocacy Network):

Along with 174 organizations and individuals, DREDF joined a letter to protest a recent decision by an Advisory Committee of the National Institutes on Minority Health and Health Disparities (NIMHD) to not recognize people with disabilities as a health disparity population across the National Institutes of Health (NIH). Such recognition would allow NIH funding to go toward projects that explicitly include a focus on disability health disparities. It would also incentivize efforts to recruit researchers with disabilities and people with disabilities as participants in clinical research. Instead, NIMHD adopted a Working Group’s recommendation to develop and fund an “Office of Disability Research” to identify and work on what the Working Group saw as research “gaps.” The Working Group members were appointed by NIMHD, and did not include any person who openly identified as a person with disabilities. As a result of this decision, the disability community will continue to be denied the tangible benefits and tools that would help end longstanding and preventable barriers, stigma, and bias that deny optimal health to individuals with disabilities.

NIMHD’s given reasoning for its rejection, released barely a week before the proposed Section 504 rule was made public, is based on ableist assumptions about disability that are apparent in both the September 1, 2023 Working Group’s presentation and NIMHD’s discussion following the presentation (approximately l20 minutes beginning at the 3:57 hour mark). The Working Group seemed stymied by the reality that disability arises from different causes, and can medically manifest in different ways, occur at different times, and progress at different rates.

The lack of a single widely accepted definition of disability was seen as a “key gap” because NIMHD could not identify beforehand who would be affected by designating people with disabilities as a health disparity population. The Working Group also defined health disparities as “preventable differences in the burden of disease, injury, violence, or in opportunities to achieve optimal health . . .”, and then stated that “not all health differences in individuals with disabilities meet the criteria of a health disparity.” The Working Group insists on an “all or nothing” approach, which apparently requires all health differences between disabled persons and non-disabled persons to be a preventable difference. This problematic application of the definition of health disparity shows NIMHD’s bias toward separating those who have a disability or chronic condition from those who experience health disparities.

One of the most powerful lessons of Section 504, and a fundamental motivation for the development of a modern cross-disability rights movement in the 70s, was the understanding that the presence of disability invoked a common discriminatory response and could therefore be fought using common legal tools and advocacy. This lesson was patently lost on NIMHD and the Working Group, which seemed unable to recognize that multiple common factors keep people with disabilities from getting equitable and effective healthcare. For the NIMHD, the well-documented impact of healthcare barriers, bias, and discrimination was lost in the specifics of individual diagnoses and medical definitions.

In the end, the Working Group concluded that there were more than twice as many risks as benefits arising from designating people with disabilities as a health disparity population. They called attention to a “high potential for mission creep and loss of focus at NIMHD” because its limited budget and staff could be overwhelmed by funding applications from such a “broad and heterogeneous population.” The Working Group decided to recommend that NIMHD establish a separate Office or Institute focused on disability research that would have a distinct budget.

This recommendation, which was accepted by the NIMHD Advisory Committee, essentially calls for segregated disability health and healthcare disparities research. Lip service was given to the need for “a greater emphasis on the intersection of disabilities and existing populations with health disparities, but it is completely unclear who would lead an intersectional effort or how research efforts would be coordinated among NIMHD and a newly created office. The Advisory Committee’s decision also fails to specify why the Working Group’s recommendations for forming a separate Office of Disability Research could not be carried out after people with disabilities receive designation as a health disparity population.

Even as we recognize Secretary Becerra and his team for getting so much right about the proposed update to the Department of Health and Human Services (HHS) Section 504 rule, we call on the Secretary to further reaffirm the principles of nondiscrimination, full inclusion of people with disabilities, and commitment to health equity by recognizing people with disabilities as a health disparity population.

Biases in Autism Research

In The Politics of Autism, I discuss autism research  -- and the opinions of autistic people about research priorities.

Hari Srinivasan at Time:

Just as psychology research had its WEIRD (“western, educated, industrialized, rich and democratic”) sampling bias, autism research has not only a WEIRD sampling bias, but also has essentially oversampled the same, narrow band of what are considered the easily “researchable autistics,” and expected those findings (as well as the applications and interventions that resulted from them) to apply to everyone.

But the spectrum is far more diverse and heterogeneous than we realize. Sure enough, even as I review past autism research as part of my studies, I look at the autistic participant profiles and the truth is that a majority don’t represent autistics like me. Autism research participant selection is filled with implicit and explicit exclusionary criteria, such as IQ cut-offs, ability to be able to sit still, to perform tasks and engage, to respond orally and not have co-occurring or complex conditions. But why should IQ be an exclusionary criterion when it is mutable and has been historically problematic for marginalized groups? I have to then wonder how findings from studies with so many exclusionary criteria would benefit autistics like me.

The Need for Lifespan Research

 In The Politics of Autism, I discuss the Inter-Agency Autism Coordinating Committee and research priorities.

 At Time, Eric Michael Garcia writes about the need for more research into lifespan issues:

And this is not for a lack of things to research about autistic people’s lifespans. Many autistic people still struggle to find employment—one study showed that autistic people in their early 20s had a lower employment rate than their disabled peers—and that is to say nothing of autistic people who go undiagnosed or diagnosed later, which is often the case for women, femme-presenting people and people of color. Similarly, it is divorced from the legitimate health needs such as how that biggest killer of autistic people with intellectual disabilities is epilepsy while those without intellectual disabilities are also at risk of dying from circulatory diseases like heart disease or suicide. Similarly, plenty of autistic people I interviewed for my book dealt with homelessness and poverty, while others are unable to access programs like Supplemental Security Income because they are not “disabled enough,” even while struggling to find employment.

Engaging Autistic People in Autism Research

 In The Politics of Autism, I discuss the sources of autism research funding -- and the opinions of autistic people about research priorities.

Mike McNulty at USC:

For too long, too few autistic people have had a say in how autism research is designed, developed and disseminated, and researchers have not tapped into the expertise that only autistic people and their families have. A new USC-coordinated project looks to upend that disparity by intentionally allying with stakeholder groups, engaging community partners and exploring ways of better responding to this diverse community in the future.

The TRUST project — short for Transforming Research: Understanding Sensory Experiences in ASD, Stakeholders Working Together — is a new, two-year project supported by a $243,000 award from the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The institute is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers and clinicians with evidence to make better-informed health and health care decisions.

“We will particularly attend to the ‘autistic voices’ of underrepresented or underserved communities and ensure that individuals who have been marginalized due to stigma, social behavior or verbal abilities are included,” said Professor Mary Lawlor, TRUST project lead at the USC Chan Division of Occupational Science and Occupational Therapy. “Autistic people have really important expertise, and it’s exciting to engage people in the community who really want to share their expertise too.

The TRUST project begins by convening four groups of stakeholders: autistic self-advocates, family members and caregivers, researchers and interdisciplinary service providers, including occupational therapists. Lawlor, who is jointly appointed to the Keck School of Medicine of USC’s Department of Pediatrics, will facilitate conversations using narrative-based strategies, which give space for people to tell their own stories with their own words about what matters most in their own lives. These stakeholder groups will then coalesce to identify new research priorities, amplify engagement of the autism community in research, foster mutual trust and expand tools for enhancing future patient-centered outcomes research.

A sustainable alliance will propel stakeholder engagement in future research that extends beyond the project’s funding window and serve as a model for research projects outside of Southern California to replicate.

“A lot of researchers think that there is only one right perspective and can’t deal with differences effectively,” Lawlor said. “But you need to have opportunities like this, with multiple perspectives at the same table, to make people feel heard and seen.”

According to Lawlor, the TRUST project will narrow several glaring gaps in the existing literature about the sensory experiences of autistic people.

First, autism research has traditionally focused on children, with relatively less attention paid to the experiences of autistic adolescents and adults. Second, autism research has oversampled white/Caucasian participants and regrettably undersampled populations with racially and ethnically diverse backgrounds. Third, research has disproportionately focused on so-called “high functioning” participants — autistic people who perform and participate in everyday activities and roles wholly or largely independently. Lastly, the uptake of sensory processing research has been slow in clinical arenas, in part because service providers are rarely engaged in university-based research studies.

“Clinicians, as much as anybody, should be involved at the starting point of research,” said Erna Blanche, a clinical professor at USC Chan, lead contributor to the TRUST team and co-lead of the Clinician and Provider Stakeholder Group.

Blanche is also a member of the Sensory Processing and Autism Network, one of the four officially designated community partners contributing to the TRUST project. It’s a community-based research network based out of USC Chan that works to improve outcomes for people with sensory processing challenges and their families in everyday life.

Though each person with autism is unique, sensory processing challenges and sensitivities to a wide range of stimuli are cited as a common experience. Occupational therapists like Blanche frequently work with children on the autism spectrum to address sensory-processing differences to more fully engage in their daily activities, relationships and roles.

Blanche says that the TRUST project is an extension of SPAN’s ongoing efforts for knowledge mobilization, an approach to research whereby university and community partners work hand in hand, start to finish, in order to co-produce knowledge and maximize their impact outside of academia.

“In a way, people with autism have been unjustly disenfranchised,” Blanche said. “This will now bring them into the research fold in a much more meaningful and systematic way.”

In addition to SPAN, three other nonprofit organizations are officially named as TRUST project partners, and this network is likely to expand over the coming years:

• 5-Eleven Hoops is a nonprofit, basketball-based organization based in Long Beach. Founded by former pro basketball player Stacy McAlister, who has a son with autism, 5-Eleven Hoops uses active play strategies to enhance positive outcomes for youth with autism and other special needs and their families by building sportsmanship, social skills, coordination, strength and cognitive development.
• Autism Speaks is the largest autism advocacy organization in the United States and sponsors autism research and conducts awareness and outreach aimed at families, governments and the public, including activities every April 2 in honor of World Autism Awareness Day.
• Harbor Regional Center, located in Torrance, is one of the state’s 21 regional centers that contracts with the Department of Developmental Services. The nonprofit organization serves nearly 15,000 people who have developmental disabilities and their families in the South Bay, Harbor, Long Beach, and southeast areas of Los Angeles County.

...

For further information about the TRUST project, contact Emily Ochi or Mary Lawlor.

Another Correlate: Aunts and Uncles on the Father's Side

In The Politics of Autism, I discuss various ideas about what causes the condition. Here is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious studies:

• Pesticides;
• Air pollution and proximity to freeways;
• Maternal thyroid issues;
• Autoimmune disorders;
• Induced labor;
• Preterm birth;
• Fever;  
• Birth by cesarean section;
• Anesthesia during cesarean sections;
• Maternal and paternal obesity;
• Maternal diabetes;
• Maternal and paternal age;
• Grandparental age;
• Maternal post-traumatic stress disorder;
• Smoking during pregnancy;
• Antidepressant use during pregnancy;
• Polycystic ovary syndrome;
• Infant opioid withdrawal;
• Zinc deficiency;
• Sulfate deficiency;
• Processed foods;
• Maternal occupational exposure to solvents;
• Estrogen in the womb;
• Morning sickness.

A release from NIH:

Roughly 3 to 5% of children with an aunt or uncle with autism spectrum disorder (ASD) can also be expected to have ASD, compared to about 1.5% of children in the general population, according to a study funded by the National Institutes of Health. Researchers also found that a child whose mother has a sibling with ASD is not significantly more likely to be affected by ASD, compared to a child whose father has a sibling with ASD.

The findings call into question the female protective effect, a theory that females have a lower rate of ASD than males because they have greater tolerance of ASD risk factors.
The results, derived from records of nearly 850,000 Swedish children and their families, appear in Biological Psychiatry. The study was conducted by John N. Constantino, M.D., at Washington University in St. Louis, and colleagues in the United States and Sweden.

“The results offer important new information for counseling people who have a sibling with ASD,” said Alice Kau, Ph.D., of the Intellectual and Developmental Disabilities Branch of NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), which funded the study. “The findings also suggest that the greater prevalence of ASD in males is likely not due to a female protective effect.”
Additional NIH funding was provided by the National Institute of Mental Health.

ASD is a complex neurological and developmental disorder that begins early in life and affects how a person interacts with others, communicates, and learns. Previous studies have found that roughly 3 times more males than females have ASD. Reasons for the difference are unknown.

One possible explanation is that females have a built-in resistance to the genetic factors leading to autism. With such a female protective effect, the theory holds that many women could carry such risk factors and be unaffected, but could transmit them to their sons, who lack the protective effect and may develop ASD.

In the current study, researchers analyzed data from Swedish national registers of births and family relationships. The children were born from 2003 to 2012. Roughly 13,000 children were diagnosed with ASD, about 1.5% of the total. Offspring of mothers with one or more siblings with ASD were about three times more likely than children in the general population to have ASD. Children of fathers with one or more siblings with ASD were twice as likely as children in the general population to have ASD, a rate that did not differ significantly than that of children whose mothers have a sibling with ASD.

According to the study authors, the results provide the first population-wide estimate of ASD risk to children of parents who have a sibling with ASD.

This finding challenges the existence of a female protective effect, Dr. Constantino explained, because if such an effect existed, the children of mothers with a sibling with ASD could be expected to have up to a 30% higher risk of ASD. Similarly, the researchers found no statistically significant increase in ASD risk for children whose uncles have ASD, compared to children whose aunts have the condition.

Reference
Bai, D et al. Inherited risk for autism through maternal and paternal lineage. Biological Psychiatry. 2020.

The Department of Defense and Autism

In The Politics of Autism, I discuss federal spending for people with autism and other disabilities. 

From the Pentagon's Autism Research Program:

It is estimated that 1 in 59 children are diagnosed with Autism Spectrum Disorder (ASD), with over 3.5 million (M) Americans living with this developmental disorder. The Department of Defense Autism Research Program (ARP) was established in 2007 to improve the lives of individuals with ASD by funding innovative, highly impactful research. Since its inception, the ARP has received $81.9M in Congressional
appropriations. The appropriation for the ARP for fiscal year 2018 (FY18) is $7.5M. Through the program’s Areas of Interest, the ARP focuses on ways to improve diagnosis, treatment, and study of the psychosocial factors that affect key lifetime transitions to independence and a better quality of life for those with ASD and their families. To date, the ARP has funded 152 research awards, resulting in over 230 peer-reviewed publications and 20 patent applications.

A December 24 release:

The FY20 Defense Appropriation provides $15 million (M) to the Department of Defense Autism Research Program (ARP) to provide support for research of exceptional scientific merit and innovation with high impact that focuses on autism spectrum disorders (ASD). As directed by the Office of the Assistant Secretary of Defense for Health Affairs, the Defense Health Agency J9, Research and Development Directorate, manages the Defense Health Program’s Research, Development, Test, and Evaluation (RDT&E) appropriation. The managing agent for the anticipated Program Announcements/Funding Opportunities is the Congressionally Directed Medical Research Programs (CDMRP) at the U.S. Army Medical Research and Development Command (USAMRDC).

Data:

Congressional Appropriations

• $81.9 million
  FY07-18
• $7.5 million
  FY19

Funding
Summary

• 160 Awards in
  FY07-18
• Recent Applications Recommended for Funding

Programmatic
Panels

• FY20 Programmatic
  Panel
• Previous Years' Programmatic
  Panels

Peer Review Participants

• FY19 Peer Review Participants
• Previous Years' Peer Review Participants

Identification, Evaluation, and Management of Children with ASD

In The Politics of Autism, I discuss the sources of autism research funding -- including the Pentagon.

From: "Executive Summary: Identification, Evaluation, and Management of Children With Autism Spectrum Disorder," by Susan L. Hyman, Susan E. Levy, Scott M. Myers and Council on Children with Disabilities, Section on Developmental and Behavioral Pediatrics, Pediatrics January 2020:

This document provides a summary of the clinical report “Identification, Evaluation, and Management of Children with Autism Spectrum Disorder,” published concurrently in the online version of Pediatrics. In the years since 2007, when the American Academy of Pediatrics published the clinical reports “Identification and Diagnosis of Children with Autism Spectrum Disorders” and “Management of Children with Autism Spectrum Disorders,” reported prevalence rates of children with ASD have increased, understanding of potential risk factors has expanded, awareness of co-occurring medical and behavioral conditions and genetic contribution to etiology has improved, and the body of research supporting evidence-based interventions has grown substantially. The updated document discusses evaluation and treatment as a continuum in 1 publication with a table of contents to help the reader identify topic areas within the report. ASD is more commonly diagnosed than in the past, and the significant health, educational, and social needs of individuals with ASD and their families constitute an area of critical need for resources, research, and professional education.

... 

The American Academy of Pediatrics supports the current approach taken by the Interagency Autism Coordinating Committee of the National Institutes of Health of including representative stakeholders in planning a meaningful research agenda. Stakeholders include families and affected individuals, scientists, clinicians, and public health agencies. This committee’s 2009 strategic plan, updated in 2017, identified 7 areas for research funding: (1) early detection, (2) underlying biology, (3) genetic and environmental risk factors, (4) treatments and interventions, (5) services and implementation science, (6) life span services and supports, and (7) epidemiological surveillance and infrastructure. It is important that multiple levels of inquiry be pursued simultaneously to inform evidence-based clinical care. These include the following:

• basic and translational science in the areas of genetics and epigenetics, neurobiology, environmental risk factors, and psychopharmacology to understand the typical and atypical brain development and function to develop ASD-specific behavioral and pharmacologic therapies;
• clinical trials to test focused interventions informed by translational studies to provide the evidence necessary for community implementation;
• epidemiological surveillance to gather data important for planning for current and future needs, including screening, diagnosis, and life span health and mental health services, with special attention to underserved populations; and
• health services research to provide guidance for comprehensive, accessible, and culturally appropriate medical, educational, and behavioral care for children, youth, adults, and families affected by ASD.

Research in all of these areas is critical to move forward with early diagnosis, effective treatment, and evidence-based interventions at each age. To provide appropriate care to all children and families affected by ASD, organizations responsible for health, education, social services, and public health need to collaborate and build integrated and adequately funded and staffed systems. The pediatric health care provider plays a critical role in identifying young children at risk for ASD; shepherding these children through diagnosis and into effective interventions; supporting the families, including siblings; anticipating and managing co-occurring health and behavioral disorders; and preparing the youth and family for transition to adult services. The updated clinical report provides the health care provider with information and resources to support the care of the child and family affected by ASD.

Autism Services in Spending Bills

In The Politics of Autism, I discuss federal spending for people with autism and other disabilities. 

From Autism Speaks (h/t Gene Bensinger):

On December 20, 2019, two appropriations “minibuses” were enacted that include the funding bills for all federal departments and agencies.

This spending package includes wins for autism research and services, including

• $2.6 billion increase for the National Institutes of Health (NIH). The bill encourages the NIH to aggressively invest in autism research consistent with the Interagency Autism Coordinating Committee (IACC) Strategic Plan, which called for a doubling in autism research spending. Specifically, it calls for “greater investment in research and collaborations focused on addressing the gaps outlined in the Strategic Plan.”
• $168 million increase for the National Institute of Mental Health (NIMH).
• $15 million for the Autism Research Program at the Department of Defense. This is double the level of spending than FY 2019. Since its inception in Fiscal Year 2007, about $100 million has been directed to promote innovative research designed to advance the understanding of ASD and to improve the lives of those living with autism.
• $2 million to reduce the risk of injury or death related to the wandering characteristics of some children with autism. This funding will allow for the implementation of Kevin and Avonte’s legislation that was passed into law last year.
• $23.1 million for autism activities at the Centers for Disease Control and Prevention (CDC). CDC’s work includes providing essential data on autism spectrum disorder (ASD) and developing resources to help identify children as early as possible.
• $1.75 million increase to the Health Resources & Services Administration (HRSA) for autism activities, with $35.2 million of HRSA funds designated for LEND.
• $13.9 billion for IDEA special education. This is a $417 million increase over last year.

These funding increases and focus on autism-specific programs keep us on a path toward new autism discoveries and supports.

Elizabeth Warren on Disability Issues

In The Politics of Autism, I discuss the issue's role in presidential campaigns.  Democratic candidates are addressing the issue in some detail, recognizing that many voters have a connection.

Elizabeth Warren has very detailed positions.

On Disability Rights:

Elizabeth’s first job out of college was teaching students with speech and learning disabilities at a public school. This role reaffirmed for her how important it is to live a life of independence and dignity. She will always stand up for the policies that help make that possible for all Americans, including Americans with disabilities.
In Elizabeth’s time in the Senate, she has fought tirelessly for people with disabilities, knowing that all areas of policy affect the community. She has championed legislation to increase accessibility across employment, education, health care, community inclusion and engagement, and housing because she knows our democracy is stronger when it is reflective of all of us.

EMPLOYMENT

Elizabeth has always believed in the principle of equal pay for equal work, but today, it is perfectly legal for an employer to hire workers with disabilities and pay them below what they pay workers without disabilities for doing the same work. They can even apply for permission to pay workers with disabilities below the federal minimum wage. It’s a disgrace.

Individuals with disabilities should have the opportunity to reach their full potential in competitive and integrated employment settings, and they should receive fair wages for their work. For these reasons, Elizabeth has worked to end the subminimum wage, and has pressured the Department of Labor to more aggressively crack down on the abuse of 14(c) certificates. This policy enforc

es harmful and inaccurate stigmas, and we should phase it out in a responsible way.
In order to provide a path to good-paying jobs, we also need to do everything we can to ensure that all students, regardless of means or background, have access to career training. That’s why Elizabeth introduced and passed the Free Career and Technical Education for High School Students Act in order to direct federal funding streams toward reducing or eliminating out-of-pocket costs associated with Career and Technical Education programs for high school students, including students with disabilities. If classes that prepare high school students for college are free, then career training classes that prepare students to enter the workforce should also be free. And she has introduced bipartisan legislation that would expand education savings accounts to cover apprentices’ out-of-pocket costs, such as for equipment and books.

EDUCATION

Elizabeth is a fierce advocate for high-quality education for all children. That is why she is a proud co-sponsor of the Keep Our Promise to America’s Children and Teachers Act, which would fully fund the Individuals With Disabilities Education Act and make sure education is a priority in the federal budget.

Elizabeth believes we must make sure our public education system creates opportunity for all our kids, including students with disabilities. That’s why Elizabeth passed an amendment to the Elementary and Secondary Education Act reauthorization to ensure that students with disabilities are able to use assistive technology to access assessments. It’s also why she introduced the bipartisan AIM HIGH Act to create guidelines for accessible instructional materials on college campuses. Elizabeth recognizes that many students face special obstacles to their education, and will always stand up for programs that help to level the playing field.

Elizabeth also knows that the fight for equal opportunity in education does not end in high school and believes we must make sure people with disabilities are not held down by student loan debt. That’s why she has called for something truly transformational – up to $50,000 in student loan debt cancellation for 42 million Americans. This will have a profound impact on the disability community, which has a 25% higher default rate on student loans than the rest of borrowers.

And to make sure we never have another student loan crisis, Elizabeth is also calling for universal free two-year and four-year public college and technical school. Her plan would make college truly universal – not just in theory, but in practice – by making higher education of all kinds more inclusive and available to every single American, including people with disabilities, without the need to take on debt to cover costs. Additionally, she has introduced legislation to prohibit the Treasury Department from forcing borrowers who are severely disabled from paying taxes on student loans that have been canceled, which would save them thousands of dollars.

HEALTH CARE

Health care is a basic human right. That’s why Elizabeth supports Medicare for All, which would give every single person in this country a guarantee of high-quality health care and access to long-term supports and services. Elizabeth will fight to make sure Medicare for All includes robust coverage for people with disabilities and people with complex care needs – and she won’t back down when it comes to making sure high-quality health care is there for those who need it.

Elizabeth will also fight to bring down the cost of prescription drugs. Right now, Washington works great for the big pharmaceutical companies, but it’s not working for people who are trying to get a prescription filled. Elizabeth’s Affordable Drug Manufacturing Act would allow the government to manufacture a generic drug when no company is manufacturing a drug, only one or two companies is manufacturing the drug and prices are spiking, there is a shortage of the drug, or the medicine is essential and faces limited competition and high prices. She supports international reference pricing, safely importing drugs from other countries, and allowing Medicare to negotiate lower drug prices. And she will work to block anticompetitive behavior in the health care industry and crack down on a range of practices that brand-name drug manufacturers use to keep prices high.

In addition to the right to physical health care, Elizabeth believes in affordable, high-quality mental health services. Despite the widespread need for these services, many Americans are denied coverage. That’s why Elizabeth introduced the Behavioral Health Coverage Transparency Act, which would hold insurers accountable for providing adequate mental health benefits and ensure Americans receive the protections they are guaranteed by law. She has also worked to hold the Health and Human Services Department accountable for improving insurers’ compliance with mental health parity laws through an online consumer parity portal.

Additionally, Elizabeth is deeply committed to both protecting and expanding Social Security benefits, which have not nearly kept up with the rising costs of health care, housing, food, and energy, for Americans with disabilities. After shrinking budgets forced the Social Security Administration to cut thousands of jobs and close more than 60 offices, leading to outrageously long wait times that left many Americans with disabilities struggling to get their benefits, Elizabeth fought to get a $480 million increase for the agency - the first increase to its operating budget in almost a decade.

COMMUNITY INCLUSION AND ENGAGEMENT

People with disabilities are often excluded from participating in their communities due to inaccessibility and lack of supports. Elizabeth realizes that removing barriers to participation is essential for people with disabilities to ensure true equality. For Elizabeth, there is no better place to start removing those barriers than in our efforts to secure our democracy.

In Elizabeth’s election security plan, she is clear that security and accessibility are not mutually exclusive. Elizabeth calls for the federal government to provide every polling location with accessible ballot machines for people with disabilities and to conduct research on how to improve voting security and accessibility for all people. In addition to calling for Election Day to be made a federal holiday, Elizabeth supports requiring a minimum of 15 early voting days to ensure that those who rely on public transit and direct support professionals, both of which could be interrupted on holidays, have ample time to vote.

Just as she knows advancements in voting security and accessibility require a federal government investment, Elizabeth also knows it takes a strong investment in medical innovation to further expand the assistive technologies available to people with disabilities. Over the past fifty years, the American system of medical innovation has transformed the health of billions of people around the world. It didn’t just appear overnight as if by magic – it is the end result of generations of huge taxpayer investments in the National Institutes of Health. That’s why Elizabeth has fought tooth and nail against cuts to the NIH budget. She has also introduced the National Biomedical Research Act and the Medical Innovation Act to restore our investments in the NIH’s cutting-edge scientific research and bring us closer to critical health care breakthroughs.

Elizabeth knows that assistive technologies only help the disability community if they are affordable. That’s why Elizabeth supports Medicare for All and why she has reached across the aisle to craft and pass bipartisan legislation guaranteeing affordable, over-the-counter hearing aids for those with mild to moderate hearing loss. And why she introduced the Audiology Patient Choice Act, a bipartisan bill that ensures people with disabilities on Medicare have access to a full range of hearing and balance health care services provided by licensed audiologists.Direct Support Professionals provide essential support to people with disabilities to help them lead meaningful, productive, and independent lives. In the United States, there is an increasing shortage of DSPs. That’s why, every year since Elizabeth entered the Senate, she has co-sponsored a resolution that recognizes the important work DSPs do and more recently called on the Department of Labor to collect data specific to DSPs. She has also cosponsored the Disability Integration Act, which would require insurance providers that cover long-term supports and services to allow people with disabilities to access home and community-based services and lead an independent life.

HOUSING

Ensuring that people with disabilities can live full, independent lives means we must also invest in affordable housing. Elizabeth’s proposal to confront America’s housing crisis --the American Housing and Economic Mobility Act -- would build or rehab 3.2 million new units, bringing rents down by 10%, and ensuring that people with disabilities and their caregivers can afford to live in the communities that they call home. Her planl also expands the Fair Housing Act to prohibit discrimination against people for gender identity, sexual orientation, marital status or source of income, including government assistance, or housing vouchers.

Elizabeth knows that policy is personal, and as president, she will always fight for the full inclusion of people with disabilities.

On Education:

My plan also lives up to our collective commitments to students with disabilities. The Individuals with Disabilities Education Act protects the civil rights of students with disabilities by guaranteeing their right to a free and appropriate public education. When Congress passed the original version of IDEA in 1975, it promised to cover 40% of the additional costs of educating students with disabilities.

But today, Congress is failing spectacularly in meeting that obligation. Last year, the federal government covered less than 15% of these costs. That failure has shifted the burden to states and school districts that simply can’t find the money to make up the difference. The result? Students with disabilities are denied the resources they need to fulfill their potential.

This will end under my administration. I’ll make good on the federal government’s original 40% funding promise by committing an additional $20 billion a year to IDEA grants. I will also expand IDEA funding for 3-5 year olds and for early intervention services for toddlers and infants.

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I am also committed to ending discrimination against all students. My administration will strictly enforce the right of students with disabilities to a free and appropriate public education. I will push to build on Obama-era policies by writing new rules to help ensure that students of color with disabilities are treated fairly when it comes to identifying disabilities, classroom placement, services and accommodations, and discipline. I am opposed to the use of restraint and seclusion in schools, and I will push for sufficient training to ensure student, teacher, and staff safety. I will protect students’ right to be educated in the least restrictive environment. And in light of the Supreme Court’s unanimous decision in Endrew F. v. Douglas County School District, which affirmed the right of every child to have the chance to meet challenging objectives, my Department of Education will help schools and districts develop and implement ambitious individualized education programs for all students with disabilities. This includes upholding the right to a fair and appropriate public education for students in juvenile detention facilities, who are disproportionately students with disabilities.

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Provide better access to career and college readiness (CCR): As President, I will enact legislation to make public two-year, four-year, and technical colleges tuition-free for all students. We must also ensure that students are able to take advantage of those opportunities and that high schools are funded and designed to prepare students for careers, college, and life. Students from low-income backgrounds are more likely than their wealthier peers to graduate high school without having taken any CCR coursework. Students with disabilities are also less likely to have the opportunity to enroll in CCR courses. I’ve fought hard in Congress to make sure high school students can access career and technical education without paying out of pocket. I’ve also proposed dramatically scaling up high-quality apprenticeship programs with a $20 billion investment that will support partnerships between high schools, community colleges, unions, and companies. I’ll work with the disability community to encourage schools to begin the development of postsecondary transition plans, as required by IDEA, earlier in a student’s school career. I’ll work with states to align high school graduation requirements with their public college admission requirements. And I’ll also direct the Department of Education to issue guidance on how schools can leverage existing federal programs to facilitate education-to-workforce preparedness.