\n<\/p>\n
The first public meeting of US autism advisers \u2013 notably, since Robert F Kennedy Jr reshaped the committee \u2013 was cancelled recently with few details, coinciding with the creation of a rival organization that has prompted some questions within the autistic community about their focus.<\/p>\n
Kennedy, the secretary of the US Department of Health and Human Services (HHS) who has long argued for a debunked link between vaccines and autism, chose entirely new members for the Interagency Autism Coordinating Committee (IACC) in late January, with fewer autistic people and several anti-vaccine advocates.<\/p>\n
The first public meeting was planned for Thursday, but it was cancelled on 7 March with no new date offered.<\/p>\n
The IACC is one of the lesser-known advisory committees, but it makes recommendations for nearly $2bn in federal research spending on autism. It can also make recommendations about autism across the federal government \u2013 on housing, defense, education, labor, social services and more.<\/p>\n
A new, separate yet similarly named organization, called the Independent Autism Coordinating Committee (I-ACC), was announced on 3 March as a pro-science group that would make research recommendations for private donors and institutions, amid growing concerns about the federal committee\u2019s alignment with Kennedy.<\/p>\n
The new, independent committee joins a growing movement of organizations rising up in the gaps of federal leadership, experts say \u2013 but critics also expressed concerns about the new committee\u2019s approach.<\/p>\n
There\u2019s only one autistic person on the new committee, and some members have pushed for a separate \u201cprofound autism\u201d category, which others in the autistic community say is not science-based.<\/p>\n
The federal committee was formed in 2006 with the Combating Autism Act \u2013 an approach that positioned autism as an epidemic to be eliminated, which officials seem to be returning to under the second Trump administration, said Steven Kapp, a senior lecturer in psychology at the University of Portsmouth. By law, the 21-person federal committee must include three autistic members; before Kennedy replaced all of the members, there were seven autistic members of the public and one autistic member from the federal workforce, including several people of color and women.<\/p>\n
The federal committee is now a \u201csham\u201d that Kennedy may use to rationalize bad science, said Matt Carey, who previously served on the committee.<\/p>\n
\u201cIt\u2019s like his ACIP,\u201d Carey said, referring to the Advisory Committee on Immunization Practices, which Kennedy similarly overhauled. \u201cThe IACC is selected to give him the answers he wants.\u201d<\/p>\n
Several of the members are anti-vaccine advocates and have promoted dangerous and ineffective \u201ctreatments\u201d for autism, including a heavy-metal removal process called chelation, hyperbaric oxygen chambers and industrial bleach enemas \u2013 all of which the FDA once warned about on a now-deleted webpage.<\/p>\n
The federal committee will \u201cfulfill President Trump\u2019s directive to bring autism research to the 21st century and support breakthroughs in autism diagnosis, treatment and prevention\u201d, said HHS spokesperson Emily Hilliard. The meeting has been postponed indefinitely, and \u201cfurther information will be shared as available\u201d, she said.<\/p>\n
Autistic people like Zoe Gross, director of advocacy at Autistic Self Advocacy Network (ASAN), are worried the federal committee will fund research on, for example, the long-debunked idea that vaccines cause autism, which she called \u201ctantamount to setting money on fire \u2013 except worse than that, because not only will they be wasteful of government funds, they\u2019ll also be disastrous for public health\u201d.<\/p>\n
A new, science-driven organization could work to counteract moves like these, Gross said \u2013 but she\u2019s concerned about the makeup and potential priorities of the new independent committee.<\/p>\n
\u201cThere\u2019s not many autistic people there, fewer than even the fraudulent IACC has, which isn\u2019t a good look,\u201d Gross said.<\/p>\n
Some of the members are also affiliated with the National Council on Severe Autism and have advocated for making \u201cprofound autism\u201d its own label.<\/p>\n
The conversation around \u201csevere\u201d or \u201cprofound\u201d autism is \u201cnot really a clinical debate. It\u2019s a policy discussion in disguise as a clinical debate,\u201d Gross said.<\/p>\n
Separating different types of autism diagnoses in this way is \u201cnot scientifically justified\u201d, said Kapp, who is autistic.<\/p>\n
\u201cDespite efforts, no independent research teams have been able to identify valid subtypes of autism,\u201d he said.<\/p>\n
Alison Singer, the president of the Autism Science Foundation, which helped form the new committee, is a controversial figure in the autistic community. In 2025, she said Kennedy deserved credit for \u201cwanting to study the causes of autism\u201d, and she has said the prevention of autism should be a \u201cstrong focus\u201d of scientific research.<\/p>\n
Autistic advocates say autism does not need to be prevented, and they worry about policies that would increase institutionalization and segregation of autistic people, \u201cwhether that\u2019s in housing, education or employment\u201d, Gross said. Instead, autistic people should be included and supported in their communities, she said.<\/p>\n
The independent committee has a genuine interest in science, Kapp said. Their success \u201cdepends on how willing the leadership would be to not just reach out to people, for showing that there\u2019s representation, but also for genuine listening across the organization and for genuine compromise\u201d and room for disagreement, he said.<\/p>\n
\u201cMy hope is that they will change,\u201d Gross said. The independent committee\u2019s first meeting is also planned for Thursday, to coincide with the now-cancelled federal committee meeting.<\/p>\n
The independent committee is working to add new members, said David Mandell, professor of psychiatry at the University of Pennsylvania and a founding member of the committee.<\/p>\n
\u201cThis group was put together very quickly,\u201d Mandell said. One of the first items of business should be to ask who is represented and who is missing, \u201cand how can we increase and enhance our ranks so that all important perspectives are represented?\u201d he said. He noted that some people and groups were invited but chose not to participate in the committee.<\/p>\n
Mandell also said that the independent group\u2019s name may change because it \u201chas a mission that is much narrower\u201d than the federal committee\u2019s.<\/p>\n
\u201cWe\u2019re really very focused on: \u2018What should the research agenda be?\u2019\u201d he said. He hopes the group is able to set the tone for the future of autism studies.<\/p>\n
Often, scientists are \u201crushing\u201d to combat misinformation \u201cafter somebody has already let loose in the world something incorrect\u201d, Mandell said.<\/p>\n
\u201cThe idea that we could proactively identify what a research agenda should look like in autism and present that to private funders, to the public, and hopefully have it ready for when there\u2019s a change in administration and another opportunity to fund high-quality science, that it will be ready then, too \u2013 that was very appealing,\u201d he continued.<\/p>\n
The conversation should always be evidence-based, Mandell emphasized: \u201cWhat I\u2019m hoping for [with] this independent group is that whatever people bring to the table, they cite their sources, and that those be rigorous, validated sources.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"
The first public meeting of US autism advisers \u2013 notably, since Robert F Kennedy Jr reshaped the committee \u2013 was cancelled recently with few details, coinciding with the creation of a rival organization that has prompted some questions within the autistic community about their focus. Kennedy, the secretary of the US Department of Health and<\/p>\n","protected":false},"author":1,"featured_media":47164,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[51],"tags":[794,5814,5821,3052,6948,15133,14263,4816,1015,789,81],"class_list":{"0":"post-47163","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health","8":"tag-administration","9":"tag-autism","10":"tag-challenges","11":"tag-committee","12":"tag-criticism","13":"tag-draws","14":"tag-independent","15":"tag-jrs","16":"tag-overhaul","17":"tag-rfk","18":"tag-trump"},"_links":{"self":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/47163","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=47163"}],"version-history":[{"count":0,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/47163\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/media\/47164"}],"wp:attachment":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=47163"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=47163"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=47163"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}