When President George W. Bush first signed the Combating Autism Act in 2006, the predecessor to the current law, there were no officially acknowledged causes for the vast majority of autism, there were no preventive methods, no treatments, and no cure. The autism rate was generally thought to be around 1 in 110[1] children (sharply up from 1 in 2000 in the 1980s[2], but the CDC was not sure if it had really gone up.)
Eighteen years and almost $5 billion[3] later, we still don’t officially know the causes of the vast majority of autism. There are no preventive methods, no treatments, and no cures. But the official autism rate is now 1 in 36 according to the CDC’s Autism and Developmental Disability Monitoring Network (ADDM)[4], and the CDC is still not sure if the autism rate has gone up or not!
We cannot prevent, treat or cure a disorder if we don't know the causes. Genetic causes have been almost the sole focus of autism research, but if the rate is going up, the cause cannot be genetic. A great number of environmental causes, from biocides, to air pollution, and vaccines are implicated in causing autism. All of them must be rigorously evaluated. But very little effort is put into finding the environmental causes of autism ($7.3 million in 2020) relative to possible genetic causes ($39.1 million in 2020).[5]
Now the leading organizations that claim to represent families affected by autism no longer even claim that they want to find a cure[6], treatments or prevention.
Annual spending on autism research with the new authorization will increase from $260 million annually to $360 million. $360 million is a trivial sum in the overall federal budget. Though autism spending amounts to a rounding error in the scope of the federal budget, that rounding error is misspent. This increase, however, just keeps pace with inflation, and given the steady 10-13% annual growth rate in the number of people with autism, we are spending less per diagnosed person over time.[7]
TAKE ACTION
Please use the panel at the right to send messages to your 2 US Senators and your member of the House of Representatives.
The current autism epidemiology program cannot answer the key question of whether the autism rate is going up. Every time new higher numbers come out they are always qualified with claims that we are not certain if the increase is real. What they do not tell us is that none of the autism monitoring projects run by the feds are designed to determine if the growth is real. Every two years when the new higher ADDM autism numbers come out, we are told that the cause is changes in diagnostic criteria and better case finding. No research is ever done to control for those factors. This uncertainty provides the cover to deny that we are in an epidemic and provides the cover for inaction.
The federal government is capable of running a successful research program to find the cause, significant treatment and prevention of major health disorders. HIV/AIDS is a perfect example. Beginning in the1980s with virtually no information about HIV.
The number of people diagnosed with autism and HIV/AIDS in the US is about the same, somewhere between 1.2 million with HIV[8] and 1.5 million with autism (depending on what estimate is used).
With HIV/AIDS we know the cause, we have accurate epidemiology, we have highly effective prevention methods--both behavioral and drugs, and we have treatments that allow most people infected with HIV/AIDS to have a normal lifespan.[9] The HIV/AIDS research program has been an enormous success. We have none of that for autism.
The federal National Institute of Health research budget for HIV/AIDS was $3.3 billion in 2024.[10] The entire 18-year CAA/ACA research budget is $4.7 billion, [11] the same as what is spent in 16 months on HIV/AIDS.
We have spent more than $100 billion on HIV/AIDS research since the 1980s. Given where we are compared to where we were, this has been money well spent. But it also serves to illustrate the paltry effort we are making on autism.
Especially when just the financial cost is considered, a 2021 study estimated that the cost of autism in 2020 was $223 billion and would rise to $589 billion by 2030. [12]
If we took the same research approach with HIV/AIDS that we have with autism, we would have spent the first 18 years of the HIV/AIDS crisis trying to figure out what the genetic reasons were why some people seem susceptible to HIV/AIDS and others do not, rather than looking for the causes and how to prevent and treat it. This approach would have been a disaster if applied to HIV/AIDS, as it has been for autism. The approach to HIV/AIDS should serve as a model of how a research program should be done for an enormous epidemic, and should be adopted for autism.
Please share the following link to this Action Alert with friends and family and on social media.
https://www.votervoice.net/AUTISMACTION/Campaigns/119803/Respond
Join the Autism Action Network email list HERE
Follow the Autism Action Network on X/Twitter @AutismActionNet
If you support the work of the Autism Action Network please consider making a DONATION HERE
[1] https://www.cdc.gov/autism/data-research/index.html
[2] https://neurolaunch.com/autism-in-the-80s/
[3] https://iacc.hhs.gov/publications/report-to-congress/2023/background.shtml
[4] https://www.cdc.gov/autism/data-research/index.html
[5] https://iacc.hhs.gov/publications/portfolio-analysis/2020/portfolio_analysis_2020.pdf?ver=5 Page 52
[6] https://www.autismspeaks.org/news/letter-autism-speaks-ceo
[7] https://iacc.hhs.gov/publications/portfolio-analysis/2020/portfolio_analysis_2020.pdf?ver=5 Page 9
[8] https://www.cdc.gov/hiv/data-research/facts-stats/index.html
[9] https://www.cdc.gov/hiv/living-with/index.html
[10] https://www.hiv.gov/federal-response/funding/budget
[11] https://iacc.hhs.gov/publications/report-to-congress/2023/background.shtml
[12] https://njms.rutgers.edu/autismcenter/rcrc/documents/articles/Autism%20Tsunami%20-%20The%20Impact%20of%20Rising%20Prevalence.pdf