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When Catherine Lord was a psychology student a half century ago, she took part in a pioneering effort to move kids with autism from psychiatric institutions into the community. Lord was inspired by positive changes in the kids and devoted her life to developing therapies for people with autism and understanding the biology of the condition.
Today, Lord is a professor of psychiatry at the University of California, Los Angeles, and renowned worldwide for developing tools to diagnose autism, which have become clinical standards, and for her efforts to improve the lives of people with autism and their families. Along with her research, Lord maintains a clinical practice where she works with people with autism, from toddlers to adults.
So I couldn’t think of a better scientist to address the views of autism espoused by Robert F. Kennedy, Jr. Since being appointed as the United States Secretary of Health and Human Services, Kennedy has continued to spread misinformation about the condition, a pattern that began two decades ago when he claimed childhood vaccines cause autism, a charge long ago proven to be false.
Earlier this year, Kennedy announced the National Institutes of Health would launch a new study to investigate the causes of autism. To conduct its study, he said, the NIH would gather medical records of Americans with autism from federal and commercial databases.
In conversation, Lord spoke with authority and concern as she pointed out the mendacity and danger of Kennedy’s comments, and clarified the state of autism research and science.
He has made a variety of statements about autism that suggests he doesn’t really know what he’s talking about.
Before we discuss RFK Jr., would you describe autism for us?
Autism spectrum disorder, or autism, is a neurodevelopmental disorder. People with the disorder may have deficits in social communication and interaction and restricted and repetitive patterns of behavior, interests, or activities. Autism is really a construct, an idea that there is something different about people who have very basic deficits or difficulties in social communication, starting very young, and also certain repetitive or sensory differences compared to neurotypical people.
Autism is probably present before birth, and it affects development. Even if someone doesn’t get a diagnosis very early, it means that you process information from the world differently, and you will be affected differently by your experiences.
Some people with autism are better at certain things than neurotypical people, but they might also be worse than neurotypical people at other things. Finally, autism is different in a 2-year-old than in a 40-year-old, even though the basic condition is still the same.
What do you think of RFK Jr.’s views of autism?
It’s not clear whether he understands what autism actually is. It is a confusing condition because it is very heterogeneous. It’s very different across people, in part because it’s developmental, and in part because it’s often accompanied by other conditions or diagnoses that affect how someone functions. I don’t think that he understands that. He has made a variety of different statements about autism that suggests that he doesn’t really know what he’s talking about. And then the statements change as someone presumably is trying to help him understand it better—but the accuracy of those statements hasn’t improved.
RFK Jr. continues to promote the discredited theory that vaccines can cause autism. And yet the theory lingers. Why do you think that is?
Many people with autism when they are babies really don’t look very different from any other baby. The clearest symptoms of autism usually become apparent toward the end of the second year of a child’s life. There is a phenomenon in autism where kids, for example, learn to say a few words or do a few things and then either don’t progress past that or actually lose those skills as they become less interested in people. The phenomenon of sort of “becoming autistic” often happens between 18 and 24 months, and many of the vaccines that kids receive occur in that time or just before that time.
Watching children miss their developmental milestones is a very difficult thing for a family. It’s also a very difficult thing for people to report, because they’re not expecting this. I think just as human beings, we want an explanation of why on Earth this is happening. And so the family is making judgments about what happened three months ago or four months ago or six months ago, and it’s easy to blame it on vaccines. It’s a simple explanation and a timely one.
However, there is no evidence whatsoever that kids who have been vaccinated are more likely to have autism. There’s nothing that suggests that what’s in vaccines might cause autism. There’s just none! On the contrary, there is data that shows that autism is present long before this age time window—in terms of differences in the brain and the brain function. The chances are very likely that what is going to produce autism is present before babies are even born, but we don’t see it.
What do you think of RFK Jr.’s investigation into the causes of autism?
I think it’s going to be a waste of money. And I also really worry—particularly if RFK Jr. does not do this in a very careful, thoughtful way—that someone will find something which we will then be forced to spend the next 10 years showing not to be true. So I do worry that this will cause harm, because there will be kids who are infected with diseases they did not need to get because their parents were afraid to vaccinate them. For RFK Jr. to say, “Oh, I think in five months I can do this,” when people have been trying to do that for 30 years—it just makes no sense.
Autism rates have risen in recent decades. Why do you think that’s happened?
There are several reasons why autism diagnosis is rising. When I started in this field 50 years ago, people did not know what autism was. Today, clinicians are much more aware of autism than they were even 30 years ago. It’s in the press, it’s on social media, it’s everywhere.
The second reason is that we think of autism as a much broader issue now. You can have autism and have intellectual disability or ADHD or depression. You can be an adult who didn’t get a diagnosis early on, but who—when we listen to your history—clearly always had these problems. So you can be diagnosed as an adult instead of when you were a child 20-30 years ago, which contributes to rates rising.
The third thing is that in some places, such as the U.S. and Western Europe, you can get better support if you have autism than if you have some other unnamed problem—and families realize that. Fifty years ago, autism was absolutely a last resort diagnosis that no one wanted to hear. No one came to a clinic hoping to get this diagnosis. Today that has changed. Now we see people who would like a diagnosis of autism because they can get better support. I think this accounts for most of the increase.
Many people with autism when they are babies really don’t look very different from any other baby.
What are the current hypotheses about the causes of autism?
We have spent 30 years looking for the causes of autism. The emphasis in the NIH for the last 30 years has been on genetics, but we haven’t found anything of practical use. Some of the genetic work has been done with the idea that if we knew what genes were associated with autism, it could be like Down Syndrome, where you would get a test—and fix those genes using gene therapy. There was a huge hope among geneticists that they would come up with such treatments, but at this point, it has not happened. And even when it does happen, it’s going to happen for a very tiny group of children because the genetic patterns exist in less than 1 percent of autism cases.
But even that approach has been received by the autistic community as very inappropriate—“wait a minute, what are you trying to fix in me?” And what do we really want to know about babies before they’re born? So I don’t think we’re moving toward prevention for a long time and before we know a lot more about genetics. As a clinician, I’m not trying to fix autism. I’m trying to help people figure out how they can live in this world. It’s not about fixing autism. It’s about supporting them and giving people strategies for doing well.
As a practicing clinician, how do you think people in the autism community view what’s happening in Washington?
I think almost everyone is concerned. People are worried that RFK Jr. does not understand autism, that he’s using it for some purpose that is not clear. I think they’re worried that they are not being represented when he’s talking about them, because he’s not talking about the breadth of autism. And they’re worried that they could be the cause of something really terrible, if we have decreases, for example, in uptake of vaccines.
I think the one vestige of positive reaction is from parents of kids who are very handicapped, saying, well, at least he’s acknowledged they exist, that there are some autistic children and adults who have very severe impairments where they need 24-hour care and cannot speak for themselves. But then, RFK Jr. said something about profound autism being defined by toilet training, which is just completely not true. So the same families were upset.
His latest statement about using health records to create a registry, made people worry about their privacy. I’ve had a bunch of people write to me and say, “Can he have access to my records or my child’s records, and how can we stop this?” Patients are concerned about DOGE and other people who are looking through health records, not knowing what they’re seeing, but making decisions. For example, if I am evaluating someone for autism, I have to put the autism evaluation code on the medical bill, but the person may not ultimately have autism. So the hope is that they will realize it’s much more difficult than RFK Jr. thinks it is. 
Lead image by Tasnuva Elahi; with images by MarLein and Hier Onyak / Shutterstock
