"Autism is not a condition we need to cure": an interview with Dr. Whitney Ellenby


When I interviewed Dr. Whitney Ellenby, a former attorney with the United States Department of Justice, who wrote about autism for The Washington Post, I felt tremendously encouraged. At a time when many government officials are cutting funding for programs that help people with disabilities or insultingly refer to an "autism epidemic," here is a person who describes autism: a different way of working, not intrinsically better, or worse than any other. As someone on the spectrum, I feel strongly that it is important that this distinction be understood.

This is not to say that there was no controversy surrounding Ellenby, who was the focus of reaction after some readers described her actions by trying to physically force her autistic child to participate in a "Sesame Street Live" show as abusive (this was based on a story of a Washington Post article that extracted it book, "Autism Uncensored: Pulling Back The Curtain"). While those who felt this way undoubtedly had the best of intentions in holding this opinion, it is also important to understand (a) that two autistic persons are not the same, and methods that may be helpful to an autistic person may be ineffective or even abusive to another and (b) even if she made an error, no parent should be defined by their errors.

Which brings us back to what works on Ellenby's approach to this question. She sees autism as a gift, not just as a form of neurological atypicalism, and is fierce and passionate in her belief that autistic individuals should be embraced as part of our diverse society. If you advocate neurological diversity and believe that the autistic community must defend your rights within the broader paradigm of social justice policy, you will share your views. The same holds true for those who want to base our conversations on autism in heavy science rather than irresponsible or even dangerous quackery. And since it was once again confirmed that MMR vaccines do not cause autism, and Amazon stopped selling books that promote the cure of autism, Ellenby had many things to say that were worth listening to.

Matthew Rozsa: I would like to talk about why the term "autism epidemic," in the context of people saying they can end the epidemic, is offensive.

Dr. Whitney Ellenby: I have a son deeply affected by autism. And I think when we talk about an epidemic, we have to be careful because we know there are far more diagnoses than ever before. We know that Asperger is included in the same diagnostic category. So we do not know to what extent there is an epidemic that suggests an increase in numbers compared to only those being diagnosed more accurately.

The idea that we could end the epidemic or put an end to, frankly, autism is an existential problem for me. I'm not sure we should be thinking in these terms because people with autism have remarkable abilities, even the most profoundly impacted, and we want what they have to give us. Not all of us want to be homogenized and equal. So there is this part, which I find difficult to absorb.

I also think the idea is too simple, too easy, that I buy a vaccine or a diet or a specific intervention that we can propose to do away with what is essentially a strain of human existence. I just do not buy.

I agree. Now, besides being offensive, there is a tremendous amount of pseudoscience that goes into it, and it can be … Can you explain, first, the different types of pseudoscience? I think it can be helpful for people to know what the arguments are and why they are silly, and also, then, why are they harmful to families?

Right. At the beginning, one of the origins was with someone named Dr. Leo Kanner, who proposed this theory that they were mothers of refrigerators. In other words, mothers who are cold and cold and who do not respond to their babies and who then cause the development of autism. Now, today, this sounds ridiculous. But back then, they were really looking for explanations and that seemed to make sense.

Since that time, there have been a number of different theories. Some are not outrageous. Some have to do with synapses in the brain, as the brain develops. Others are outrageous and I would put into that category the idea that you can cure autism with a specific diet. I think the issue of the vaccine was refuted. It is really important that people notice when it comes to this particular subject because it continues to resurface, that the parent of that link, that supposed link, never came to create the link. He never proved nor ever stated that the MMR vaccine led to autism, but the media caught on the cue 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 bunch of unscrupulous vendors, I would say, out there pretending to use everything from chelation to hyperbaric oxygen chambers to things that might be genuinely dangerous, hospitalized child to, in quotes, cure autism. I think it ignores the fact that, again, autism is not a condition that we need to heal. And even if you wanted to soften some of the symptoms that could be interfering with a person's ability to function in the world, the vast majority of the things being put there will not do that. Or, if they work, they'll be the ones in a million stories. They will not work for the dominant group of people who have autism.

I think we need to change the dialogue to accept people with autism as they are, capitalizing on the unique strengths they bring to the table and turning those skills into marketable skills because they understand the most unexplored, most diligent, and honest. workforce we have in this country, in my opinion.

Speaking as much to me as to other autistic people I encountered, socioeconomic discrimination is one of the biggest problems faced by autistic people. What can be done to solve this?

I have some ideas and I will write about it. I feel very strongly that when you look at people with autism as a whole, that you are looking at a group of people who tend to be very honest, hardworking, they tend to be punctual, they are rule driven. This is what you want in a workforce. Many people with autism have specialized skills that are as varied as the individual himself, so I do not want to generalize, other than to say that I believe we have a tremendous workforce in autism being neglected. I think we need some things:

One that I feel most strongly is that we need some colleges or trade schools specifically for people on the spectrum. God knows, we have enough community colleges and colleges and everything that is training our neurotypical children. But the truth is that most of them leave college with no skill enough to do the job. We have, in autism, a population that could be easily trained to be detached in whatever their passion. We need programs that are, say, two to three, maybe four years, to train this population to realize their potential. That's one thing.

I also think we need legislation. Because there is a fair amount of stigma and discrimination. Just as we have equal pay and we do not allow discrimination in the workplace, I think there needs to be some mandates that require, particularly within the government, that a number of people hired are qualified people with disabilities. Remember, my emphasis is on qualified. We are not talking about charity. We are talking about giving space to people who have been trained and qualified to perform specific jobs for which we are now going to give opportunities to compensate for the fact that historically we have rarely given this population the opportunities they deserve. .

I completely agree. And now I will move on to the question of how we can end the hysteria surrounding vaccines and autism? How do we deal with this, really, as a matter of social justice and not as a reason for panic?

I think that's a great question. I think panic tends to come up anecdotally. As someone who knows hundreds of families and organizes events for hundreds of families of children who have children with autism, everyone who has a child on the spectrum invariably knows someone who claims that their child was well until receiving a certain vaccine, and then they regressed . Of course, it might well be the case that the child had autism and this only happened to manifest the symptoms more or less at the same time that you receive the vaccines.

I think the only way to defeat anecdotes … obviously, the scientific evidence is not enough. I usually connect people who are anti-vaxxers with deniers of climate change. For some reason, certain groups are not willing to pay attention to science and we know it. So getting to them with more science still will not necessarily dispel the myth.

I think we need to do some things. One is an education campaign that comes from within the autism community. People like me will invariably have more credibility because we live with a child with autism. People can not yell at me and say I do not know what I'm talking about. I do. I live with a child and I do not believe in anti-vaccine theory. I think it's dangerous. So we need more people within the community speaking against community members saying that all of you have to stop it. The research was done, science said.

The other thing, however, that would be useful to do to dispel hysteria is to split the vaccine and eliminate it. Take measles, wait six months, mumps, wait six months, rubella. I think this spreads the argument from the other side that's what's causing it. If we break down, if there are no preservatives and we continue to see autism, it really takes away the armor from the argument that aggregation of vaccines is to blame.

Moreover, from the point of view of social justice, 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 afraid to give him the vaccine. But my rational brain thought, okay, I'll wait until she's about three years old, because I do not know anyone who has regressed and demonstrated autism at that age, and then I go ahead and give her the vaccines she needs. Because the truth is that we can not afford to resurface all those diseases that could be mortal. 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 when we refuse to vaccinate is exposing other groups of people to diseases that could kill them.

This is not acceptable. We have to take the blame for that. We do not want our children to have autism, other people do not want their children to have these diseases. Therefore, it is up to all of us to be part of this social contract and not behave irresponsibly.

OK. My final question is: why do you support Amazon's decision to remove the various controversial autism-related books from your market?

Another great question. I thought it was a bold move. I have not seen anyone … I have seen scientists speak against what they thought were myths perpetrated on autism, but I had never seen a business provider take such a bold step and that step of saying, you know what? We will not even take the product. I thought it was socially audacious. I thought I was socially responsible because I think what is happening is, whether these people believe it or not, those who write books that claim that this diet or this intervention can cure autism, they are making a profit every time they sell that book . What I believe they are doing is selling false hopes. I think they are giving an illusion of something that maybe they believe might work, but scientifically, they have to know that it can not work. If it were that simple, autism would have been cured decades ago.

But I think, from an unscrupulous point of view, they are selling this false hope. They know that parents are desperate for a cure, particularly parents like me, say, who have deeply autistic children. My book focuses on how to make the most of the child as he is, without working to change it. I think what they are doing is selling a version of the child that is not attainable. They are inevitably going to make money, they are going to get publicity, they will resurface all these conspiracy theories. And I applaud Amazon for getting up and saying, look, it's a free market. You are allowed to say whatever you want. But we will not carry messages that are illusory and that ask false hopes to the parents. This is not responsible and we will not support it by giving you our platform. I thought it was a fantastic decision.


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