Families with loved ones afflicted with autism are exhausted and desperate for answers. They are owed more honesty about their challenge than they have been receiving. While I haven’t walked in their shoes over the long haul, I have visited.
I recall the first day I walked into an autism center as a regular substitute teacher. I had been in challenging classrooms before, including substitute teaching in the local juvenile hall and pretty much every alternative education program in Santa Cruz County. But nothing compared to the autism center’s environment.
There was noise, emotional intensity and unpredictability. I worked one-on-one with a boy who needed the same routine every single morning. If the staff did not grab McDonald’s for him before school, he would flip out. Full meltdown. Screaming, hitting, running. Sometimes the staff had to zip him inside a blue sheet to keep him from hurting himself.
It was one of the most challenging jobs I ever had, and it gave me a deep respect for parents who live with that reality every day.
Autism rates keep rising. The CDC reported autism at 1 in 150 children in 2000. By 2020, it was 1 in 36. More recent sampling puts it closer to 1 in 31. If you had told people back in 2000, when the official rate was 1 in 150, that in 25 years it would rise to 1 in 31, then wouldn’t that be reason for alarm?
We are told there is no reason for alarm. The accepted talking point to justify this swiftly increasing autism rate is better diagnosis and awareness. Surely this is somewhat true, but is that the only factor?
What I know is that families (and teachers) see this real surge with their own eyes, and they want real transparency, not predetermined talking points.
Who really speaks for autism?
Autism Speaks is arguably the most well-known and richest autism nonprofit in the country.
According to the most recently available IRS filing, the group brought in $35 million in total revenue for the fiscal year ending March 2024, including $33.6 million in contributions and grants. The filing also shows several unnamed donors giving between $700,000 and $2.6 million.
Independent charitable foundations that have reported giving such big bucks since 2023 include the Chern Family Foundation ($747,985), the Gordon Gund and Llura Liggett Gund 1993 Charitable Foundation ($430,000), and the William Randolph Hearst Foundation ($250,000). Nearly $2 million came in from massive donor advised funds such as the Vanguard Charitable Endowment Program, which do not disclose the ultimate source of their contributions, as is their legal right.
Similarly, Autism Speaks does not disclose donor names.
The Autism Speaks CEO was paid $676,823 in combined salary and benefits for the year ending March 2024. At least nine executives had combined salaries and benefits exceeding $200,000. Autism Speaks reports spending $600,000 on lobbying during the year.
The board is filled with corporate leaders from finance, consumer products, hospitality, and real estate. The bios indicated some of them have autistic family connections, but until 2015 not a single autistic person served on the Autism Speaks board.
To some, this gave the perception that Autism Speaks preferred to speak about autistic individuals rather than include them. In 2015 the group added its first two autistic board members, but even today, out of roughly thirty total directors, only two are autistic.
Even this change was harshly criticized by the Autistic Self Advocacy Network (ASAN), a nonprofit charity that proclaims it is “run by and for Autistic people.” ASAN issued a news release that criticized Autism Speaks for a “persistent and fundamentally flawed lack of regard for the voices of the autistic community” and an “imbalanced budget which allocates the majority of their finances towards biomedical research and fundraising.”
ASAN concluded with an assertion that placing a pair of autistic people on the huge board wasn’t going to repair the alleged problems:
Unless and until Autism Speaks makes significant changes to their practices and policies of fighting against the existence of autistic people, these appointments to the board are superficial changes. Barring such changes, Autism Speaks will continue to fail to be an organization that can create real, positive change for the Autistic community.
As recently as April 2025, ASAN was still alleging that none of these problems at Autism Speaks had been rectified.
Autism Speaks claims to be a neutral authority on what causes autism and what does not. But as the criticisms imply, there is a more complicated story. For example, do their connections to large pharmaceutical corporations influence their views and the policies they push?
Through at least the end of 2015, Autism Speaks was listing “prevention” of autism and a “potential cure” as part of its mission statement.
But in 2016, responding to pressure from those (such as ASAN) who argued that autism is a lifelong condition to be understood and supported rather than “cured,” Autism Speaks quietly removed its original goal to “find a cure.” An Autism Speaks board member explained that “the organization grew to believe that autism is something to be worked with for promoting fulfilling and productive lives of people on the spectrum – rather than something that has to be done to.”
The vaccine debate
Clearly, the shifting of such a major goal by Autism Speaks demonstrates that the “science” of autism is still very much unsettled.
This year, and with much controversy, the CDC updated its autism and vaccines page. The CDC did not claim that vaccines cause autism. It also did not claim that they could never play a role in any scenario. Instead, the CDC acknowledged that the full scope of available evidence today did not support the older statement of absolute certainty that vaccines had somehow been conclusively proven not to cause autism (something that simply isn’t studied enough to be asserted), and that continued research into environmental and medical exposures is legitimate.
The CDC opened the door to more study in this unsettled field, not less. That is what science is supposed to do.
But Autism Speaks responded by criticizing the CDC for softening its former dogmatic stance. In its official statement, the NGO urged the CDC “to restore fact-based language, reaffirm that vaccines do not cause autism.” Despite its enduring hostility towards Autism Speaks, the Autistic Self Advocacy Network is on the same page regarding vaccines, and issued a similar criticism.
But this is where a potential conflict of interest regarding Autism Speaks raises a red flag.
The Autism Speaks website highlights major partners such as Genentech, one of the largest biotech and pharmaceutical companies in the world, while Tris Pharma identifies Autism Speaks as a long-term partner and has run fundraising campaigns with matching donations for the nonprofit.
Autism Speaks has also participated in major drug development collaborations. One of the biggest was EU AIMS, a research partnership that brought together Autism Speaks and pharmaceutical companies, including Roche, Eli Lilly, Janssen, Pfizer, Servier, and Vifor Pharma. The goal of the project was to develop biomarkers, conduct clinical trials, and identify potential new drugs related to autism.
On this point, ASAN and Autism Speaks are again working at cross purposes. The NGO run by autistic people believes that “autism doesn’t need to be cured” and that instead of “wasting time and money on something that isn’t possible and that autistic people don’t want, we should focus on supporting autistic people to live good lives.”
Whether or not this turns out to be a scientifically supportable position, it does absolve ASAN of any conflict of interest with Big Pharma. That benefit of doubt is harder to support for Autism Speaks when it speaks out against research into vaccines, a position obviously in the interest of pharmaceutical companies whose products are under consideration for potentially contributing to autism.
Whether a vaccine link is established in the future is yet to be seen. But regardless, to shut down research into one possible factor is unscientific, yet surely benefits the drug-makers who are so closely tied to Autism Speaks. It is fair to ask if Autism Speaks is simply acting as a mouthpiece for corporate interests in this regard, rather than a nonprofit for the public good.
The ongoing dispute with ASAN certainly shows that even within the autistic community, there is a robust debate regarding the value that Autism Speaks is bringing to the table. And the pharmaceutical ties and resistance to researching a vaccine link creates an impression that Autism Speaks may be behaving more as “Big Pharma Speaks.”
When autism affects roughly one in thirty children, no credible line of inquiry should be shut down. Families want the truth. They want transparency. They want every reasonable environmental factor explored thoroughly. Parents who are struggling with the realities I saw inside that autism center deserve honesty and open science.
