While the methods and the amount of collaboration required may differ, what goes for individuals goes for organizations. Every single time you are faced with a decision, you need to ask “Do we have the right information to make this decision?” If you are continuously making decisions, you need to continuously ensure that those decisions are well-informed.
Erica Hall – It’s never a good time to do research
Tag: research
Prenatal testing and disability rights
An underlying theme of The Speed of Dark is disability rights in general, but more specifically autism rights in a world where the genetic cause of autism has been determined and a prenatal “cure” is given to any fetus that is found to be autistic. Of course, here in the real world we aren’t at that point – yet. But we’re getting there.
Since reading The Speed of Dark, I’ve picked up Prenatal Testing and Disability Rights to try to get a more detailed understanding of the various opinions and considerations around the question. I’ve given this some thought before – I posted the following as To hear or not to hear, is that the question? in September 2006 – but it’s a big question deserving a bit more thought.
= = == === =====
In the world of autism the question, “If there were a cure available for you or your child, would you use it?” is pretty much rhetorical, food for thought. As such, discussions are more theoretical than practical. In the world of the deaf and hard of hearing, however, cochlear implants mean answering this question has much more practical implications.
At first thought for most ‘hearing’ people (here we go with labels and descriptors again), a technology that would allow or restore hearing seems to be a no-brainer. I think that most hearing parents of deaf children would jump at the chance to make their kids “not deaf.” (For now, I’m going to ignore the fact that the results of cochlear implants vary person to person.) As those kids get older, though, the question becomes a bit more complicated, as the kids (and then adults) establish their identities in the context of the deaf culture. (For a similar discussion of the impact of age on the decision to apply/impose a cure, see my earlier post Thoughts on curing autism.
There are many similarities in the arguments on both sides, and I think that the debate in the deaf community may offer some insights into the same question for autism. For example, the following description of different perspectives could very easily be applied to the question of curing autism:
The (deaf community’s) perception is that there’s nothing wrong. There’s nothing that needs to be fixed. Our perception is, there is something that needs to be fixed. So from the very foundation, we’re diverging in our perspectives.
A Google search on Cochlear Implant controversy brings back quite a few listings, here are some examples of comments in the debate:
- The controversy over cochlear implants in children has many sides. For some in the deaf community, CIs are an affront to their culture, which as they view it, is a minority threatened by the hearing majority.
- The technology seems like a medical miracle to many hearing parents and doctors who see the technology as a cure for deafness. But the cochlear implant has long been the center of a stormy debate. Some deaf advocates worry that the view of deafness as an illness to be cured marginalizes the deaf and stigmatizes those who can’t –or don’t wish to–use an implant.
- Most doctors schedule the procedure as soon as possible in young children to increase their odds of acquiring oral language skills. But some deaf advocates worry that hearing parents may wind up making a choice their deaf children would not have made for themselves.
- That view of hearing loss as pathological is at the heart of the cochlear controversy. On the extreme end, some deaf advocates who communicate only via sign language and shun any attempt to learn oral language, view the device as a threat to their unique, sign-language-based culture. But even to those with far more moderate views, the cochlear implant is a symbol of the hearing world’s desire to “fix” deaf people.
- The conflict concerning cochlear implants is centered around the definition of disability. If deafness is defined as a disability, in the eyes of many, it is something to be altered and repaired. According to the medical view, deafness is a disability. On the other hand, if deafness is a cultural identity, it should be allowed to thrive and, given the emphasis on diversity in today’s society, should be readily accepted and supported. This opinion is based on the cultural view of deafness. Therefore, although the controversy over cochlear implantation seems simple, it is based on the very complicated and often unstated implications of the true meaning of deafness.
- Altering a deaf child with surgery at an early age would only cost money once. In contrast, providing interpreting, note taking, and assistive technology would not only continually cost society money; these practices would also create inconveniences for others because of the language barrier.
- Those who oppose the use of cochlear implants do so for several reasons. These people challenge the supporters of cochlear implants by asking questions such as, “What is normal?” and “Do the quality and quantity of the benefits outweigh the risks involved?”.
- Parents, confronting a new diagnosis of deafness, react with a wide spectrum of emotions including denial, guilt, the need to blame someone, and the need to find a miracle. Doctors and parents tend to see the child as missing something and view the deafness as a disability that must be fixed to make the child “normal” or whole again. This attitude can have serious social and emotional implications. A child who is told she is “broken” and needs to be fixed will forever see herself as less of a person because of her deafness.
- The problem is that 90% of deaf children are born to hearing parents. In many cases, these hearing parents may have never met a deaf adult. It is common for parents to be introduced to a number of audiologists and speech therapists when their child is first diagnosed with a hearing loss but to never be taken to meet a deaf adult so that they may receive the other perspective. They are told that something is wrong with their child. It may never be mentioned that deafness is considered to be a cultural identity for some people and that implants are seen as unnecessary. The parents of the deaf child, wanting only what is best for their child, will want to make sure that the child has the opportunity to succeed. If all they have been told is that the child will need to speak to function and that there is a procedure that can provide this, of course they would want the implant. To the parents, it is seen as the instrument of success.
- Et cetera.
===== === == = =
Is truly objective research possible
The debates within the world of autism are nothing if not contentious, with claims by one group very often countered by another group as based on “flawed research” or contaminated by conflicts of interest that taint the results. I think we all like to believe that we are objective when we come up with our ideas, and collect data to support those ideas. (I know I do.) But maybe we’re not. Maybe we can’t be.
Here are some thoughts on the “relative” nature of research methodolgy from Lilia Efimova, currently engaged in research for her PhD (completely unrelated to autism or anything to do with autism).
…the validity of scientific claims is always relative to the paradigm within which they are judged; they are never simply a reflection of some independent domain of reality (Hammersley & Atkinson, 1994, p. 12)
…methods rest on philosophical presuppositions. These remain embedded in them, even if they are not taught or discussed or attended to explicitly. (Yanow & Schwartz-Shea, 2006, p. 370)
No context is value-free. Academic disciplines promote particular ways of observing, dissecting, measuring, interpreting, and otherwise making sense of the phenomena under investigation. One’s decisions may emerge within or resistant to these disciplinary structures. One’s decisions also derive from one’s research goals, which are seldom acknowledged in research reports but which meaningfully affect the design, process, and outcome of a study. (Markham, 2007)
…all research is a practical activity requiring the exercise of judgement in context; it is not a matter of simply following methodological rules (Hammersley & Atkinson, 1994, p. 23)
Visit Lilia’s original post for complete source information of the citations.
Just a plain, ordinary, loving, proud parent
I started writing about autism, specifically about being an autism parent, just over three years ago. One of my goals was to provide information that would be useful for parents who have recently received a diagnosis of autism for their child. This post is my attempt to give you, as a parent of a newly diagnosed autistic child, an idea of what you will likely find as you try to understand what that diagnosis means to you and your child.
Parenting is a challenge, no matter who your kid is. No matter what you do, someone somewhere will tell you that you are doing it wrong. If you are already a parent, you know what I mean. How many times have you heard someone tell you that your kids should spend more time outside, less time on the computer or with their video games, more time reading, less time on the phone; that you should spend more / less time with them, give them more / less independence, etc etc.
It is no different being the parent of an autistic child, except maybe for the passion with which complete strangers will tell you how poor a job you are doing. A few things you can expect to hear from others, or read in blogs, etc:
“You’re going to screw your kid up if you get him vaccinated.”
“You didn’t vaccinate? Why the hell not?”“If you don’t start with intensive early therapy and treatment, there is no hope for your child.”
“If you start with all that intensive early therapy and treatment and try to change him, he’ll be emotionally scarred for life.”“Why are you trying to mainstream him at school, he would be better off in a special placement.”
“Why aren’t you pushing for a mainstream placement, that is where he should be and the school just needs to suck it up.”“You can’t blame that person for getting upset, that outburst was quite disturbing and invasive to others.”
“Screw that person. They need to just get over it an realize that everyone is different and has the right to be who they are.”“You need to cure your child of this terrible affliction, recover him from the damage that has been done and get on with your life the way it was supposed to be.”
“Your child doesn’t need a cure, you need to accept that he will be different, that your life will be different, and that you need to just get on with it.”
These are, of course, examples from the extremes. But you will quickly find that there is not, in general, a lot of middle ground in terms of how people will judge you.
In your readings and explorations of autism, you will find that there is no known cause, and that some people think that vaccines are the cause. Some will even say that there is no cause (or least no need to find a cause). Those who think it was caused by vaccines will try to convince you that you need to cure your child through diet or other types of medical procedures, some will say you need intensive behavior therapy. Some will tell you there is no need for a cure. These are all things you will have to decide for yourself.
As you learn more about autism, you will also find yourself learning more about autism advocacy and all the forms it takes. There are groups of parents, medical professionals, and others that will tell you your child has been poisoned by vaccines and that you need to cure – sometimes referred to as recovery – him through diet or other medical treatment. There are those that will tell you that you need to cure your child through intensive behavior therapy. Many, though not all, of these advocates will also help you understand the accommodations and supports that you will need and are entitled to. Then of course there are all of the organizations that have formed to promote these various forms of advocacy. Importantly, the vast majority of these advocates are not autistic themselves.
Once you realize this, you will discover a separate world of autistic advocates for autism. You will quickly find that, despite the stereotypes, all autistics are not the same. You will hear that your child wasn’t poisoned by vaccines, or anything else, and that there is no need for a cure. You may also hear or read that some autistics do want to be cured. You will get plenty of advice – some good, some not so good – about how to raise you child from the perspective of someone who used to be an autistic child. You will hear from autistics diagnosed as adults, and learn what their life was like as an autistic child without the benefit / burden of a diagnosis.
About two months ago, autism blogger Lisa Jo Rudy challenged parents to “quit autism for just one day.”
Your child with autism may always be autistic, but there are places and circumstances in which it either doesn’t matter – or in which your child’s special talents make autism irrelevant. Whether it’s at the beach, in the woods, at a concert, or creating a work of art – just for one day – go somewhere where autism doesn’t matter.
Just for one day, quit being the parent of a child with autism. And become just a plain, ordinary, loving, proud parent.
Everything I’ve learned about parenting an autistic child can be boiled down to an incredibly simply stated idea (provided to me by a fellow autism dad): Parenting is parenting. My response to Lisa’ challenge reflects this attitude:
Just one day? Every day should be like that. At the very least, every day should start like that. You can’t always control how a day will end up, but only you can control how your day starts.
I am the parent of a trampolinist. I am the parent of a horse-back rider (equestrian?) I am the parent of two pianists. I am the parent of two high school students. I am the parent of two avid gamers. I am the parent of an autistic son and an NT son.
I am, to use your words, “just a plain, ordinary, loving, proud parent.”
Every day.
Everyone will have something to say about how you raise your autistic child, most everyone will judge you in one way or another. In the end, of course, the only person’s judgment of you as a parent that matters is your child’s. All you can do is be a plain, ordinary, loving, proud parent. Everything else is just details.
Genetic engineering and autism
As far as I know, all of the arguments about the increase in autism diagnoses being too rapid to be purely genetic are based on an assumption of randomness in the process. From that perspective I must admit that it seems unlikely that you could explain the increase in autism diagnoses purely to genetics.
But is this really a random process?
This thought occurred to me yesterday when I heard a teaser for yesterday‘s Talk of the Nation on NPR, on which they had a segment titled Genetically Engineering a ‘Perfect’ Baby. In the teaser, they played a quote from one of the guests in which he said something along the lines of:
We’ve been engaged in genetic engineering for hundreds, if not thousands, of years. It happens every night in bars and clubs and every where around the world, when men and women ‘select’ the mate they want to help parent their child.
Which got me thinking: What if we (humans) have been engaged in a process of informal genetic engineering – maybe more appropriately referred to as selective breeding – over the past hundred years that has contributed to the increase in autism during that time, especially of the “high-functioning”, Asperger’s type of autism? I can hear many of you, even as I type this: What the hell are you talking about? And you can bet I’ve got my fire-suit on for all the flames that are sure to come my way. But I’m serious.
Consider this: Over the past 100 years or more, the engineers, scientists, mathematicians and other technically oriented people have become more important to the success and progress of our society. As these people’s importance has grown, so has their power and their desirability as a mate. As a result, these “geeks” have more opportunities to reproduce and further the survival of geek genes. When two geeks get together, especially if they are geeky in different ways, that is even more geekiness that passes down to their children.
Or, as a good friend once put it, “Geeks are breeding more now than they used to.” I apologize for the bluntness of the statement, or if it offends, but this is how she said it. (I’ve actually used that quote before, in an August 2005 post discussing the article Scientists begin to trace autism’s genetic roots in my hometown newspaper the St. Louis Post Dispatch.)
Does anyone know of any studies that address the non-randomness of mate selection and potential impact on genetic diversity, especially as it may relate to autism? I did a quick Google search, but didn’t really come up with much.
(Back on the subject of the Talk of the Nation segment, make sure you check it out. You can also join the conversation on the subject on their blog. Some very interesting comments so far.)
How about a nice game of chess?
Remember at the end of the early-80’s movie, War Games, when Matthew Broderick’s character David showed the WOPR how to play tic-tac-toe, and then how the WOPR learned the futility of global thermonuclear war by comparing it to tic-tac-toe? And how WOPR (or Joshua) then commented on the futility of a game that can not be won (except by not playing), and asked David if he would like to play a “nice game of chess”?
I can’t help wondering if the whole vaccine / autism thing is an exercise in futility for both sides, a game of unwinnable tic-tac-toe, or if it is a game of chess, still in the opening phase with the middle-and end-games left to come. And if it is a game that can be won, what exactly is it that the victors will win?
Blind faith
When was the last time you changed your mind about something related to autism? If you read back through my nearly three years of posts here you’ll see that my own thoughts on the matter have fluctuated quite a bit. (Good thing I’m not a politician!). It’s not that I have trouble making up my mind, it’s just that I seem to learn something new everyday that influences my opinions.
In a post entitled Nestor Lopez-Duran Ph.D on Autism, Science and Faith-Based Advocacy, Autism dad Harold Doherty, author of Facing Autism in New Brunswick, references the following comments from Lopez-Duran:
what I believe doesn’t really matter, because “beliefs” rapidly turn into blind faith, even amongst scientists. Instead, good science only occurs when positions are flexible and reflective only of the status of the research (data) at any given time
Nestor L. Lopez-Duran Ph.D., Translating Autism, About Science and faith-based advocacy
Doherty goes on to provide his own thoughts:
Many issues such as the mercury-autism, vaccine-autism, genetics-environment arguments in autism discussions purport to revolve around science but often depart from the science and embrace the faith-based advocacy referenced by Dr. Lopez-Duran. To the great detriment of anyone with an interest in understanding the nature and causes of autism.
It is very difficult to maintain this kind of cold objectivity when the subject in question is your own child. But if we, as a society, ever want to get anywhere on these questions (assuming there is somewhere to get to), this is an important lesson to keep in mind.
On a completely separate note, I will be taking a short break from posting here. You may still, however, see my name pop up in comments of other blogs. I plan to return on April 2, not coincidentally World Autism Awareness Day.
no straight lines 