Secretary Kennedy has cut back on autism research, and you can act. You should act. You must act.
Here are data from NIH Reporter on new NIH autism grants by fiscal year. I pro-rated the results from 2026, since the fiscal year ends in September. This graph shows only those grants which are new in each fiscal year, not those which are funding ongoing projects.
New grants are down 60% from 2025. Funding is down 80%.
I am going to ask you to read that again. An 80% drop in funding for new research grants.
You should be asking yourself about continuing grants. Continuing grants are also down. Overall, total NIH autism grants and funding are down by about half from 2025. Would you have been angry if such a cut was made under a different secretary? Not only is this a big cut overall, but this is also a Secretary who chooses to just not spend authorized funds. If you would have been silent under a different Secretary, then this letter isn’t for you. If you would have spoken up — you have to speak up now.
Autism CARES authorizes about $2B in research funding. Think about that. $2B earmarked for autism research. You may not agree with where the priorities have been placed. But you are in danger of being the Committee that not only allows HHS to not spend those funds, but also to see Autism CARES not be renewed.
Renewal of the ACT is far from guaranteed. If you look at past IACC meetings, you will find multiple instances where Tom Insel commented that congress does not like “single disease” bills. Renewal every four years is a real fight.
The Autism CARES Act is up for renewal in 2029, the same time your terms expire. Ask yourself, would congress vote to renew the Act if the funds they authorize aren’t being spent?
We should address the elephant in the room. Congress is already going to be disinclined to renew the Act if it gives a platform to a Committee that promotes an anti-vaccine and pseudo-science agenda. You may feel validated with the appointment of Mr. Kennedy. But you haven’t convinced congress and you are unlikely to do so in the next couple of years. Moreover, are you willing to bet $2B that could help the autism communities on making your case to Congress?
In short, you have two big problems. First, your agenda is, to be polite, unpopular. Second, you are overseeing not the coordination of autism research, but the lack of autism research. I suggest to you that you focus on getting new autism research funded. Besides helping to ensure that Autism CARES gets renewed, it is your job.
Many of you have worked with Mr. Kennedy. I wouldn’t be surprised if you have his email and his phone number. You may be the Committee in history that has the best chance to be heard by the Secretary. If he doesn’t hear from you on this, you have no excuse.
You also have the official avenues to make yourselves heard. The Committee can draft a letter to the Secretary. You can make your voices heard by the NIH directors who are sitting with you and who can forward your views up the chain. But, for those of you who know Mr. Kennedy, you have to reach out and make him understand that refusing to fund autism research harms the very communities he has claimed to support for decades.
I once sat on the IACC. I know what it is like to feel the responsibility to the autism communities of ensuring that autism research funding is well spent and that the Federal commitment to autism research doesn’t fade.
Respectfully Submitted
Matthew J. Carey
Left Brain Right Brain 
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