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When I interviewed Dr. Whitney Ellenby, a former disability lawyer with the US Department of Justice, who wrote about autism for The Washington Post, I felt extremely encouraged. At a time when many government officials cut funding for disability badistance programs or insultingly refer to an "autism epidemic," here's a person who describes autism for this. that it is: a different mode of operation, and not intrinsically better or worse than any other. As a member of the spectrum, I firmly believe that it is important that this distinction be understood.
This is not to say that there was no controversy around Ellenby, who was retaliated after some readers described her actions to physically force her autistic son to attend a show. of "Sesame Street Live" as abusive. on a story excerpt from an article from the "Washington Post" that extracted it book, "Uncensored autism: pull the curtain back"). While those who felt this way have no doubt the best intentions in the world, it is also important to understand (a) that there are no two identical autistic people, and that the methods that might be helpful to a autistic person might be ineffective or even abusive to another and (b) even if she made a mistake, no parent should be defined by their mistakes.
Which brings us back to what works in Ellenby 's approach on this issue. She sees autism as a gift and not just as an atypical neurological form. She is fierce and pbadionate in her belief that people with autism should be recognized as part of our diverse society. If someone defends neurological diversity and believes that the autistic community should defend its rights within the larger framework of the paradigm of social justice policy, you will share its views. Ditto for those who want to base our discussions on autism in a hard science rather than in an irresponsible or even dangerous quackery. And as it has again been confirmed that MMR vaccines do not cause autism and that Amazon has stopped selling books promoting autism treatments, Ellenby had plenty of things to say who deserved to be heard.
Matthew Rozsa: I'd like to talk about why the term "autism epidemic", in the context of people saying that they can end the epidemic, is offensive.
Dr. Whitney Ellenby: I have a child profoundly affected by autism. And I think when we talk about the epidemic, we have to be careful because we know that there are many more diagnoses than ever before. We know that Asperger is included in the same category of diagnosis. So, we do not know to what extent there is an epidemic that would suggest an increase in numbers compared to people diagnosed more accurately.
The idea that we could end the epidemic or put an end to autism is an existential problem for me. I'm not sure we should even think about it because autistic people have remarkable abilities, even those most deeply affected, and we want what they have to give us. We do not all want to be homogenized and identical. So there is that part that I find difficult to absorb.
I also think that the idea is too easy, too easy, that I buy a vaccine, a diet or a particular intervention that we could claim to end what is essentially a constraint of human existence. I just do not buy it.
I agree. Now, in addition to being offensive, there is a lot of pseudoscience in this, and it can be … Can you explain, first of all, the different types of pseudoscience? I think it can be helpful for people to know what the arguments are, why they are crazy, and why they hurt families?
Sure. In the beginning, one of the origins was with Dr. Leo Kanner, who claimed it was the theory that it was chilled mothers. In other words, cold, icy mothers who do not react to their babies then caused them to develop autism. Today, it seems ridiculous. But at the time, they were really looking for explanations that seemed to make sense.
Since then, there has 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 this category the idea that one can cure autism with a particular diet. I think the vaccine issue has been refuted. It is really important that people realize, in particular, the question, because it continues to resurface, that the ancestor of this link, this so-called link, has never really established the link itself. He never proved and never really claimed that the MMR vaccine had led to autism, but the media picked up on this suggestion and allowed it to get started. It has been incredibly damaging, and it has always been, that people continue to make a connection that has never been scientifically established.
And then, of course, you have a whole bunch of sellers, unscrupulous sellers, I would say, who claim to use everything from chelation to hyperbaric oxygen chambers, to things that can be really dangerous, which has brought the child to be dangerous. hospitalized to cure autism. I think that does not take into account that, again, autism is not a condition that must be cured. And even if you wanted to alleviate some of the symptoms that might interfere with the person's ability to function in the world, a large majority of what has been broadcast will not do it. Or, if they work, they will be story on a million. They will not work for the mainstream group of people with autism.
I think we need to steer dialogue towards the acceptance of people with autism as they are, capitalizing on the unique strengths that they bring and turning those skills into marketable skills because they constitute the greatest untapped wealth, the most industrious and the most honest of all. the manpower we have in this country, in my opinion.
With respect to both myself and other autistic people I have encountered, this socio-economic discrimination is one of the most serious problems faced by people with autism. What can be done to remedy this?
I have some ideas and I will write about it. I am quite convinced that when you consider autistic people as a whole, you consider a group of people who tend to be very honest, who work very hard, they tend to be punctual and to comply with rules. . That's what you want in a work force. Many people with autism have specialized skills as varied as the individual himself. So I do not want to generalize except to say that I think we have a huge work force in autism that is neglected. I think we need a few things:
One of the things that is closest to my heart is that we need colleges or trade schools specifically for the spectrum people. God knows we have enough colleges and community colleges and everything that trains our neurotypical kids. But the truth is that most of them come out of college without being skilled enough to do the job. We have, in autism, a population that could easily be trained to be exceptional to whatever their pbadion takes them. We need programs that last, say, two or three or even four years to train this population to its potential. It's one thing.
I also think that we need legislation. Because there is a lot of stigma and discrimination. Just as we have equal pay and we do not allow some discrimination in the workplace, I think that some mandates require, especially within the government, that a certain number of people hired be people. qualified disabilities. Remember, my focus is on qualification. We are not talking about charity. We are talking about leaving room for trained and qualified people to fill specific jobs to which we will give the opportunity to compensate for the fact that historically, we have rarely given this population the opportunities that they have. she deserves. .
I completely agree. And I will now move on to the question of how can we allay the hysteria surrounding vaccines and autism? How do we approach this, really, as a matter of social justice rather than a cause for panic?
I think it's a great question. I think panic tends to happen anecdotally. As a person who meets with hundreds of families and organizes events for hundreds of families of children with autistic children, anyone with a child on the spectrum invariably knows someone who claims that their child is going so far. that he receives a certain vaccine, then: they have regressed. Of course, it may very well be that this child is autistic and that the symptoms come about at the same time that you receive the vaccines.
I think the only way to overcome the anecdotes … obviously, the scientific evidence is not enough. I often make the link between people who are anti-vaxxers and the deniers of climate change. For some reason, some groups simply are not willing to pay attention to science and we know it. So coming to them with even more science will not necessarily dispel the myth.
I think we have to do a few things. One is an education campaign from the autism community. People like me who invariably will have more credibility because we live with an autistic child. People can not scream 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. It is therefore necessary that more members of the community denounce the other members of the community by stating that you must all put an end to this situation. The research was done, science spoke.
The other thing it would be useful to do to dispel the hysteria is to break the vaccine and space it out. Do measles, wait six months, mumps, wait six months, rubella. I think this has the effect of spreading the argument from the other side that this is the cause of this. If we divide it, if there is no conservation officer and we continue to see autism, it will take away the whole bazaar of the argument that the grouping vaccines to blame.
Apart from that, 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 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 later regressed and demonstrated autism at that age, and then I'm going to give her the vaccines she needs. Because the truth is that we can not afford to have a resurgence of all these diseases that could be life threatening. The other people in the social contract are children with leukemia, people whose immune systems are immunocompromised. In refusing to vaccinate, we must understand that we expose other groups of people to diseases that could kill them.
This is not acceptable. We must take responsibility for that. We do not want our children to be autistic, other people do not want their children to have these diseases. It is incumbent upon us all to be part of this social contract and not behave irresponsibly.
D & # 39; agreement. My last question is: why do you support Amazon's decision to remove from its market the various controversial books on autism?
Another good question. I thought it was a bold move. I had not seen anyone … I had seen scientists oppose what they thought were myths about autism, but I had never saw a professional salesman take this bold step and that decision to say, you know what? We will not even wear the product. I thought it was daring social. I thought it was socially responsible because I think what's going on, whether these people believe it or not, those who write books that claim that this diet or this intervention can cure autism, they take advantage whenever they sell this book. What I believe they do, is sell false hopes. I think that they give the illusion of something that might perhaps seem to work, but scientifically, they must know that it can not work. If it was so simple, autism would have been cured decades ago.
But I think that from an unscrupulous point of view, they peddle this false hope. They know that parents are desperate for a cure, especially parents like me who have profoundly autistic children. My book focuses on how to make the most of the child as he is already without working to change it. I think what they do is sell a version of the kid that is not feasible. They will inevitably make money, they will advertise, they will bring forth all these conspiracy theories. And I applaud Amazon for getting up and saying, look, it's a free market. You are allowed to say what you want. But we will not be sending out specious messages that carry false hopes to parents. This is not responsible and we will not support you by giving you our platform. I thought it was a great decision.
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