On February 13th, the president issued an Executive Order saying that the administration would be establishing a commission to attempt to lower the prevalence of autism and chronic health conditions in the United States. The proposed plan is full of attempts to research thoroughly debunked science, states goals that run counter to the actual actions taken by the administration, and spreads misinformation about autism. ASAN disapproves of the proposed plan, and will be joining efforts to push back against its harmful ideas, as well as the harmful policies proposed by the current administration.
The proposed plan refers to autism and other disabilities as “a dire threat to the American people and our way of life.” This is fundamentally inaccurate. Autistic people have always been here, including before America existed. We aren’t new. The document cites the increase in autism diagnosis since the 1980s as evidence of an “epidemic.” This ignores the fact that healthcare access has changed dramatically in the last forty years.
Historically, there have been multiple diagnostic disparities—a difference in the number of people diagnosed between different categories of people—among autistic people. Women, adults, gender diverse people, and people of color are all generally speaking less likely to get an autism diagnosis—both because testing was modeled off of a very small group of people, and because having access to diagnosis tends to be harder for these groups (due to things like access to professionals able to diagnose autism in these categories, access to insurance, ability to access transportation to get to said professionals, and access to childcare or time off of work, among others).
Another reason more people have autism diagnoses today is that what it means to be diagnosed with autism is much different today than it was in 1980. Diagnostic manuals were revised in 1994 and in 2013 because clinicians increasingly recognized that autism is a spectrum. Only a narrow subset of autistic people could qualify for diagnoses prior to 1994, and many conditions that we now know frequently co-occur with autism were considered disqualifying for an autism diagnosis. The result was many autistic people went undiagnosed or got misdiagnosed and couldn’t get the supports that they needed.
Both of these facts mean we’ve been underdiagnosing people in these groups for decades. This has only just started to change, as these factors that determine access begin to – Medicaid expansion states making it possible for more people to be insured, for example. That means that we aren’t seeing an increase in the number of autistic people that exist – rather, more of us are getting access to the tools necessary to get a professional diagnosis. It is entirely possible that this is also true of ADHD, which is referenced in a similar capacity later in the order.
The order also refers to autism as a “disease.” Autism is a developmental disability—and disability is a natural part of human diversity. Autism is something we are born with, and that shouldn’t be changed. Autistic children should get the support they need to grow up into happy, self-determined autistic adults. For many people, diagnosis is the first step towards accessing those supports. Increased diagnosis is a positive thing; it indicates the many, often multiply-marginalized, autistic people who are gaining access to autism diagnoses and receiving the supports they need.
In addition to the administration’s focus on autism as a disease, the executive order’s focus on preventing “obesity” presents certain people’s bodies as undesirable or diseased, rather than part of a natural variation and a largely genetic factor. This also ignores the fact that weight loss has both incredibly low rates of success, and that weight cycling (losing and gaining weight rapidly due to diet) has consistently negative overall impacts on health. Weight stigma and fatphobia is often the cause of negative health outcomes, including delayed diagnosis and treatment of actual medical problems. The focus on prevention of the issues this administration considers undesirable, combined with their proposed cuts to Medicaid, will do untold harms to people of the United States, and will result in exacerbation of current disparities in access to high-quality medical care for fat Americans.
People with disabilities are not burdens; painting disabled people as burdens is ableist and presents disabled people as a “problem to be solved,” rather than a group of people who deserve to be fully included in all aspects of society. This focus on preventing disability, rather than providing supports and services to the many disabled Americans already living, so they can access school, work, housing, healthcare and other aspects, are even more disturbing coming from a president who has baselessly blamed people with disabilities and other marginalized groups for the recent airplane crash in Washington DC, and who allegedly said, in reference to his own disabled family member, that people like us “should just die.”
The Trump administration is also currently pursuing policies to curtail the rights of people with disabilities. Trump’s statements about disabled and minority members of America’s workforce mirror his executive orders directing agencies, including the FAA, to discriminate against people with disabilities and other marginalized groups. Trump has encouraged agencies to discriminate against and sideline members of the federal workforce based on their identities and stripped away or suspended government activities that protect against discrimination. There are also reports that he intends to issue an executive order severely reducing or even abolishing the Department of Education, an act that not only violates the separation of powers set out on the Constitution, but also will result in the Department of Education having the reduced ability to enforce the rights of students to accommodations, inclusive education, and to fight discrimination in schools. The president and Congress are also pursuing damaging cuts to Medicaid. People with disabilities rely on Medicaid for essential health care and supports, and any cuts to Medicaid, no matter how the President and Congress say they are targeting these cuts, will hurt us.
Under the leadership of Trump, who has publicly claimed that he believes in the debunked claim that vaccines cause autism, and Robert F. Kennedy Jr, who has founded an anti-vaccine group, claimed that no vaccine has been proven safe and effective, that the recommended vaccine schedule for children is dangerous, and that “autism does come from vaccines,” ASAN is deeply concerned about the call for increased causation research. Trump claimed in December that he would direct the HHS to investigate a connection between vaccines and autism, which has already been proven to be nonexistent. The executive order also directs the Make America Healthy Again commission to look into the “potential over-utilization of medication, certain food ingredients, certain chemicals, and certain other exposures pose to children.” While some of these things may indeed be connected to or cause other disabilities, such as lead poisoning and fetal alcohol syndrome, they do not cause autism. We also ask the president, why, if he is concerned about the link between toxic chemicals exposure for American children, he, in his first term, rolled back many regulations aimed at reducing toxic emissions and, in his second, has cut programs enforcing restrictions on toxic emissions, and pledged to further roll-back regulation aimed at eliminating and decreasing pollutants.
We are deeply concerned at the Trump administration’s commitment to further research thoroughly debunked myths about autism and his disregard for established science and research. We are also deeply concerned about the potential damage caused by President Trump and Secretary Kennedy using official channels and government agencies to promote false “cures” and “treatments” for autism, as well as other disabilities. This will not only decrease American confidence in public health agencies, but also cause real harms, such as the decrease in childhood vaccination in the United States since the beginning of the pandemic and the death of 83 people in Samoa, both attributable to anti-vaccine advocacy and specifically now-Secretary Kennedy. Autism causation research is dangerous, ignores decades of science and research, and ignores the autistic community, which has been insistent that we do not need or want a cure for autism, and that we will fight for the civil rights and services and supports needed for us to fully participate in all aspects of society.
The executive order also targets the health care that many people rely on directly. The order plans to focus on the “prevalence of and threat posed by” prescriptions for a range of medications prescribed to individuals with ADHD, depression, anxiety, and many other conditions. Secretary Kennedy has repeatedly stated his belief that school violence is caused by SSRI prescriptions, an ableist claim that has been studied and debunked. To the contrary, many of these medications are not only beneficial to people with significant health needs, but often life-saving. SSRIs are used for a range of mental health conditions including depression, anxiety, post-traumatic stress disorder, and obsessive compulsive disorder. For many people, these medications are an essential part of their health and wellbeing. Similarly, medications for ADHD have been found to reduce the risk of premature death by nearly 1/5th. Rather than making America healthy, these attacks on essential medications directly threaten the health of many Americans. This is hardly the first threat to Americans’ health to come from this administration in the past month; previous executive actions have threatened the ability of transgender and gender-nonconforming people to access health care and attacked any mention or consideration of racial or gender equity across the government, including health equity research. Any effort to “address chronic disease” that refuses to acknowledge the health disparities we experience is doomed to fail before it has even started.
The executive order says that, “There may be public hearings, meetings, roundtables, and similar events.” In an administration where health agencies are already freezing out stakeholders, this vague suggestion is inadequate. People with disabilities must be heard on issues that threaten to directly impact our access to health care and services. ASAN calls upon the administration to carry through on its responsibility to listen to the people, and to listen to the disability community when we say that this research direction is not only wasteful, but will cause harm to countless people across the United States. ASAN and our community must fight alongside the many other communities harmed by this administration to protect our civil rights, the programs that our communities depend on, and our community from these attacks.