Sunday, October 17, 2010

New Open-Access E-Journal: Molecular Autism

While hunting around the Internet for autism-related research articles I might want to write about here, I found something really exciting: a free, totally open-access online journal dedicated to the molecular biology of autism.

Molecular Autism, from the look of it, was just started up this year. Its editors-in-chief are Joseph D. Buxbaum and Simon Baron-Cohen.

Here is their first editorial, a vision statement of sorts for Molecular Autism:
Molecular Autism joins other journals targeting autism and associated conditions but differs in key ways. First, Molecular Autism is both online and open access. In a field where dissemination of accurate information has become so important, where internationally, scientists, educators, clinicians, and families are tracking the developments and are looking for up-to-date, definitive and accessible sources of scientific information, Molecular Autism will provide such a forum. Open access means that the articles are freely available to all, worldwide, and at no cost to the reader. Online publication allows for no restriction on number or length of articles and for the inclusion of all available digital technologies: large data sets, unlimited use of color, slide shows, animation, video clips, and links to other web pages, all at no additional charge. Articles are published online on the day of acceptance and, very soon after, are listed in bibliographic databases and full-text article repositories. BioMed Central is a leader in online, open access journals ensuring that this mission will be seamless.
The second way in which Molecular Autism differs from other journals in the autism-science field is by having a focus on the molecular level. Whereas other journals have a broad remit, from clinical and educational psychological studies through cognitive experiments to neuroimaging and genetics, Molecular Autism will publish articles that have a bearing on the molecular basis of autism and related conditions. This does not preclude a behavioural or cognitive or neural study, so long as there is also a molecular measure in the study or the implications for the molecular basis of autism are considered. Our reason for this requirement is that part of our mission statement is to accelerate research into the fundamental determinants of the condition. The first 60 years of autism research have had a bias toward the psychological, and we intend - via this new journal - to correct this emphasis.

The third way in which Molecular Autism differs from other autism journals is that it aims to achieve integration across the multiple levels that these syndromes affect. We now recognize that autism will not be understood by a single discipline, be it genetics or neurology or psychology. Rather, each level has to be mapped on to the next, to reveal how mechanisms give rise to the phenotype within each system. This makes autism and related syndromes complex but the response to such a challenge has to be scientific articles that attempt to tackle such multi-level complexity.
We are in a transformative period in autism research. Behavioral interventions have been shown to be effective, and earlier diagnosis, using molecular and behavioral methods, becomes critical to take advantage of these interventions. In parallel, identification of etiological causes of autism has led to novel drug targets, and several large-scale clinical trials are being carried out based on these findings. We underline the important ethical issue that research into efficacy of medications should evaluate not only improvements in areas of known disability, but the lack of unwanted side effects (particularly ensuring that areas of strength in autism are not compromised). Molecular Autism will be at the forefront of these breakthroughs.

There's a lot in that editorial, and some of it (especially that last paragraph) needs unpacking.

First things first: I love, love, love free open-access journals. There's a persistent idea floating around that strong anti-science sentiment in public life is at least partially the fault of scientists themselves, who are terrible communicators walled off from the rest of the world in their insular academic and corporate R&D communities. Making the content of scientific journals freely available online to everyone* seems to me like a great way of letting the public in on what scientists are doing, although I do think it would be even better if articles could be (re)written for public consumption in more accessible language, with more detailed explanation of what individual data mean. (I understand that doing that requires a lot more work from scientists, who are very busy, though, and that if these articles were to be posted online for free, that work might well be uncompensated. I still think it would be an awesome thing to do, I'm just not sure how to make it a less onerous, thankless task for the researchers who'd be doing it).

I'm also very interested in the molecular mechanisms of autism --- I like biochemistry and molecular and cellular biology in general, and obviously I've got an existential interest in learning how my autistic nervous system differs from the standard model --- and not as interested in the fields of psychology and special education, which is where the bulk of autism-related research is being done. (Nothing against those fields, I just find molecular biology more interesting).

So, from a standpoint of pure intellectual curiosity, I'm tremendously glad there's an open-access journal dedicated to the molecular biology of autism. From a disability-rights standpoint, though, I worry about the implications of Molecular Autism's editors' stated ambition to shift the focus of autism research more onto molecular biology and away from psychology and education.

(Not that psychology and education haven't yielded some deeply problematic ideas about autism and methods to treat it --- psychology has given us both the mother-blaming "refrigerator mother" theory of autism and, more recently, the dehumanizing notion that autistic people can't feel empathy; and more educational, learning-theory approaches to autism tend to overemphasize the teaching of how to simulate "normal" behavior).

The trouble with mechanistic, biologically-based autism research, as Sarah discusses in this oldish post --- especially with research focusing on finding genes, biomarkers, or very early behavioral phenotypes characteristic of autism --- is that it's always done with an eye toward eradicating autism altogether.

No discussion of research into autism genetics can be complete without a discussion of the ethical issues of prenatal testing and screening for autism; no discussion of the neurophysiology of autism can be complete without addressing the risks and benefits (and who takes the risks, versus who reaps the benefits) of prescribing drugs to alter that neurophysiology; likewise, no discussion of early behavioral differences between autistic and non-autistic infants is complete without addressing the ethics of intensive normalization training, especially in terms of consent.

The last paragraph of the editorial I quoted does not acknowledge that there are any ethical issues with ABA (the "behavioral interventions" alluded to, which are to be implemented as early as possible), though they do tip their hat to the idea that forced drugging is problematic.

Another criticism of biological research into autism is that it won't improve quality of life for autistic people. I don't agree with this as much as I agree with the earlier criticism about ethics, and autism researchers too often ignoring the wishes, rights and concerns of actual autistic people; I think research into the neurobiology of autism has great potential to lead to better medications for neurological or psychiatric problems autistic people have. We are plagued by anxiety, depression, obsessions and compulsions, phobias, disabling sensory hypersensitivities, distortions or jumbling, and many of us have other problems, like seizures. Our autistic neurology is not always at the root of these problems, but it can certainly interfere with our attempts to treat them. If personalized medicine is the wave of the future, it makes sense that autism-specific drugs (even if those drugs are not *for* any aspect of autism) will be a part of that. Knowing how our nervous systems work, and how they differ from non-autistic people's, could lead to the development of drugs that will be more effective and less risky or loaded with unpleasant, unpredictable side effects in us.

So, while I don't want research into underlying causes of autism to be scrapped --- I want to know what autism is, on a genetic, cellular and molecular level, just as much as these researchers do; and also, I think the knowledge that molecular autism research yields might also yield drugs that could improve quality of life for some autistic people --- I would like to see active engagement with autistic people on the part of these researchers. I want autistic people weighing the ethics of various avenues of research, and I want their opinions published in Molecular Autism alongside the proposals for research they're critiquing.

*Everyone with a computer, Internet access, and the ability to read whatever language a given article is written in, that is --- and they're not all in English!


Lisa said...

Wow! Glad I stumbled on this! I work with kids on the spectrum, and I've learned far more from them than they've learned from me. Our classrooms have a ratio of about 5 adults to 4-7 kids, and we treat each child as an individual. One of the things we struggle with is the concept that most people have that "all autistics (sic) are the same, like miniature 'Rainman' types." There simply is no one model that fits all children. And medicating them to simply 'control' or 'extinguish' behaviors is downright criminal. We've certainly made great strides in the past 10 years or so, but there is a phenomenal amount of research (and education of the public) to be done.

Lindsay said...

Hi, Lisa; welcome to the blog, and I'm glad you found the idea of a totally open-access autism research journal as exciting as I did.

You might be interested in blogs written by autistic people who are also special educators (or training to be special educators); one I can think of is Amanda Forest Vivian, who is a college student who has interned at a school for autistic children and sometimes works as a camp counselor for developmentally disabled kids. Here and here are some posts she's done about her thoughts on, and experiences in, special education.

Here's a post from Zoe, another autistic college student who's volunteered at a summer program for autistic children.

Finally, here's a blog by an autistic woman who has worked as an elementary- and middle-school teacher.

Ole Ferme l'Oeil said...

I think you have said very important things and said it well.