When I interviewed Dr. Whitney Ellenby, a former U.S. Department of Justice Disability Rights attorney who has written about autism for The Washington Post, I felt tremendously encouraged. At a time when many government officials are either cutting funding for programs that help disabled individuals or insultingly referring to an “autism epidemic,” here is a person who describes autism for what it is: a different way of functioning, not intrinsically better or worse than any other. As someone who is on the spectrum, I feel strongly that it is important that this distinction is understood.
This isn’t to say that there hasn’t been controversy around Ellenby, who was the focus of backlash after some readers described her actions trying to physically force her autistic son to attend a “Sesame Street Live” show as abusive (this was based on an story from a “Washington Post” article that excerpted her book, “Autism Uncensored: Pulling Back The Curtain”). While those who felt this way no doubt had the best of intentions in holding that opinion, it is also important to understand (a) that no two autistic people are the same, and methods that may be helpful for one autistic person could be ineffective or even abusive for another and (b) even if she did make a mistake, no parent should be defined by their errors.
Which brings us back to what works about Ellenby’s approach to this issue. She views autism as a gift, not merely a form of neurological atypicality, and she is fierce and passionate in her belief that autistic individuals should be embraced as part of our diverse society. If one champions neurological diversity and believes that the autistic community should advocate for their rights within the larger paradigm of social justice politics, you will share her views. Ditto for those who want to ground our conversations about autism in hard science rather than irresponsible or even dangerous quackery. And given that it has once again been confirmed that MMR vaccines do not cause autism, and Amazon has stopped selling books that promote autism cures, Ellenby had many things to say that were worth hearing.
Matthew Rozsa: I’d like to talk about why the term “autism epidemic,” in the context of people saying they can end said epidemic, is offensive.
Dr. Whitney Ellenby: I have a child who is profoundly impacted with autism. And I think when we talk about an epidemic, we have to be careful because we know that there’s a great deal more diagnosis than there ever was before. We know that Asperger’s is included in the same diagnostic category. So, we don’t know to what extent there is an epidemic which would suggest a rise in the numbers versus just people being more accurately diagnosed.
The idea that we could end the epidemic or put an end, frankly, to autism is an existential problem for me. I’m not sure that we should even be thinking in those terms because people with autism have remarkable capacities, even the most profoundly impacted, and we want what they have to give us. We don’t all want to be homogenized and the same. So, there is that part of it, which I find difficult to absorb.
I also think the idea is just too facile, too easy, that I either buy a vaccine or a diet or a particular intervention that we could purport to end what is essentially a strain of human existence. I just don’t buy it.
I agree. Now, in addition to it being offensive, there is a tremendous amount of pseudoscience that goes into this, and it can be … Can you explain, first, the different types of pseudoscience? I think it can be helpful to people to know what the arguments are and why they’re baloney, and also, then, why they are hurtful to families?
Sure. The beginning, one of the origins was with someone called Dr. Leo Kanner, who purported this theory that it was refrigerator moms. In other words, moms who are icy and cold and unresponsive to their babies that, then, caused the babies to develop autism. Now, today, that sounds ridiculous. But at the time, they were really searching for explanations and that one seemed to make sense.
Since that time, there have been a host of different theories. Some are not outrageous. Some have to do with synapses in the brain, how the brain develops. Others are outrageous and I would put in that category the idea that you can cure autism with a particular diet. I think the vaccine issue has been disproven. It’s really important for people to realize when it comes to that issue in particular, because it keeps resurging, that the progenitor of that link, that purported link, did not ever actually make the link himself. He never proved nor did he ever really claim that the MMR vaccine led to autism, but the media picked up on the suggestion and he allowed them to run with it. It has been incredibly damaging and something that has lasted to this day, that people continue to make a link that has never been scientifically established.
And then, of course, you have a whole host of vendors, unscrupulous vendors, I would say, that are out there purporting to use everything from chelation to hyperbaric oxygen chambers, to things that can be genuinely dangerous, that caused the child to be hospitalized in order to, quote-unquote, cure autism. I think it overlooks the fact that, again, autism isn’t a condition that we need to cure. And even if you wanted to ameliorate some of the symptoms that might be interfering with the person’s ability to function in the world, a great majority of the things that are being put out there are not going to do that. Or, if they work, they’re going to be the one in a million story. They aren’t going to work for the mainstream group of people who have autism.
I think we need to shift the dialogue towards accepting people with autism for who they are, capitalizing on the unique strengths that they bring to the table, and turning those skills into marketable skills, because they comprise the greatest untapped, most industrious, and honest workforce that we have in this country, in my opinion.
Speaking for both myself and other autistic people I have encountered, that socioeconomic discrimination is one of the biggest problems that autistic people face. What can be done to address this?
I have a few ideas and I’m going to be writing about that. I feel very strongly that when you look at people with autism as a whole, that you’re looking at a group of people that tend to be very honest, very hard working, they tend to be punctual, they’re rules oriented. This is what you want in a work force. Many people with autism have specialized skills that are every bit as varied as the individual him or herself, so I don’t want to generalize, other than to say I believe that we have a tremendous work force in autism that’s being overlooked. I think we need a few things:
One that I feel most strongly about is we need some colleges or trade schools specifically for people on the spectrum. God knows, we have enough colleges and community colleges and everything that’s training up our neurotypical kids. But the truth is, most of them come out of college not skilled enough to do labor. We have, in autism, a population that could easily be trained up to be outstanding at whatever it is their passion takes them. We need programs that are, let’s say, two to three, maybe even four years to train this population up to fulfill their potential. That’s one thing.
I also think we need legislation. Because there is a fair amount of stigmatizing and discrimination. Just like we have equal pay and we don’t allow certain discrimination in the workplace, I think there need to be some mandates that require, particularly within the government, that a certain number of people hired are qualified people with disabilities. Remember, my emphasis is on qualified. We’re not talking about charity. We’re talking about making space for people who have been trained up and are qualified to do specific jobs to whom we are now going to give opportunities to make up for the fact that historically, we have rarely given this population the opportunities that they deserve.
I completely agree. And I’m now going to move on to the question of how can we quell the hysteria surrounding vaccines and autism? How do we address this, really, as a social justice issue rather than as a cause for panic?
I think it’s a great question. I think the panic tends to arise anecdotally. As somebody who meets hundreds of families and runs events for hundreds of families of children who have children with autism, everybody who has a child on the spectrum invariably knows somebody who claims that their child was fine until they received a certain vaccine, and then, they regressed. Of course, it could very well be the case that that child had autism and it just happened to manifest the symptoms around the same time that you get the vaccines.
I think the only way to defeat anecdotes … obviously, the scientific evidence is not enough. I often link people who are anti-vaxxers with climate change deniers. For some reason, certain groups are just unwilling to pay attention to the science and we know that. So, coming at them with even more science is not necessarily going to dispel the myth.
I think we need to do a couple things. One is an education campaign that comes from within the autism community. People like me who, invariably, are going to have more credibility because we live with a child with autism. People can’t yell at me and say I don’t know of what I speak. I do. I live with a child and I do not believe in the anti-vaccine theory. I think it’s dangerous. So we need more people within the community speaking out against fellow members of the community in saying, you all have to stop this. The research has been done, science has spoken.
The other thing, though, that would be helpful to do to dispel the hysteria is to break up the vaccine and space them out. Do the measles, wait six months, mumps, wait six months, rubella. I think what that does is it diffuses the argument on the other side that that’s what’s causing this. If we break it up, if there are no preservatives and we continue to see autism, that really takes the armor out of the argument that the bundling of the vaccines is what’s to blame.
Apart from that, from a social justice perspective, again, I think we have to realize that we are part of a social contract. I understand the concern. I have another child and I was a little bit trepidatious about giving her the vaccine. But my rational brain thought, okay, I’m going to wait until she’s about three because I’m not aware of anyone who has then regressed and demonstrated autism at that age, and then I’m going to go ahead and give her the vaccines that she needs. Because the truth is, we can’t afford to have a resurgence of all these illnesses that could be deadly. Other people within the social contract are children with leukemia, people who have immunocompromised immune systems. We have to realize that what we are doing by refusing to vaccinate is exposing whole other groups of people to illnesses that could kill them.
That isn’t acceptable. We have to take the blame for doing that. We don’t want our children to have autism, other people don’t want their children to have these diseases. So it’s incumbent upon all of us to be part of that social contract and not behave irresponsibly.
Okay. My final question is, why do you support Amazon’s decision to remove the various controversial autism related books from their market?
Another great question. I thought it was a bold move. I had not seen anybody … I’d seen scientists speak out against what they thought were myths perpetrated about autism, but I’d never seen a business vendor take that bold move and that step of saying, you know what? We’re not even going to carry the product. I thought it was socially audacious. I thought it was socially responsible because I think what is happening is, whether these people believe it or not, the ones who write books who claim that this diet or this intervention can cure autism, they are profiting every time they sell that book. What I believe they’re doing is selling false hope. I think they’re giving an illusion of something that maybe they believe it can work, but scientifically, they have to know it can’t work. If it was that simple, autism would have been cured decades ago.
But I think from an unscrupulous point of view, they’re peddling this false hope. They know that parents are desperate for a cure, particularly parents like me, let’s say, who have profoundly autistic children. My book focuses on how to make the most of the child as the child already is without working to change them. I think what they’re doing is selling a version of the child that is not attainable. They are inevitably going to make money, they’re going to get publicity, they’re going to resurge all of these conspiracy theories. And I applaud Amazon for standing up and saying, look, it’s a free market. You’re allowed to say whatever you want. But we aren’t going to carry messages that are specious and that pedal false hope to parents. That’s not responsible and we will not support you by giving you our platform. I thought it was a terrific decision.