Shannon Des Roches Rosa www.squidalicious.com My son has had a challenging few months. We have been scrambling, hard, to figure out the best ways to support him, help him feel comfortable and settled. Medical treatments have helped, as has a forensic approach to figuring out stressors in his environment, as has looking back through his daily record for patterns in sleep, illness, exercise, and routine. But when he’s still unhappy or dysregulated despite all our best efforts plus the efforts of his extended team of doctors, educators, and therapists, I feel like I’d do anything to help him. An autism parent at such a loss is in a potentially dangerous spot. Their autistic child more so. Because if mainstream medicine and legitimate therapies and approaches can’t provide answers, that’s when parents tend to look elsewhere. That’s when they risk exposing their child to therapies that can cause physical harm (e.g.,…
Tag: science
As some folks in the autism communities seem to misunderstand the purpose and mission of the IACC — the Interagency Autism Coordinating Committee, we asked recent IACC appointee Matt Carey to talk about why he joined the IACC, what the IACC does, and what he hopes to accomplish as a member. From the IACC member bios: Dr. Matt Carey joined the IACC as a public member in 2012. Dr. Carey is the father of a young child with multiple disabilities, including autism spectrum disorder, and is a frequent contributor to the Left Brain/Right Brain blog and other autism blogs. His writing focuses on reviewing current autism research in an understandable way for the public and he is deeply committed to communicating the importance of getting the science right for autism. TPGA: What is your elevator pitch, in terms of telling people what the IACC is and what it does? Dr.…
Emily Willingham www.emilywillinghamphd.com www.forbes.com/sites/emilywillingham Let’s start with the headlines blaring the news about a recent autism study. They almost invariably use the phrase “grow out of autism,” even though the study itself does not use that phrase or even reference “grow” except to talk about head circumference. Instead, the authors of the report, published in The Journal of Child Psychology and Psychiatry, use the term “optimal outcomes” to describe what they detected in a group of 34 people who were diagnosed as autistic when they were under age 5. As the study authors themselves state, this idea that autistic people might show reduced deficits to the point of losing a diagnosis is not new. In fact, first author Deborah Fein and colleagues cite studies identifying frequencies of “optimal outcomes” as high as 37% among autistic people. The lingering open questions relate to whether or not the autistic people in these…
Emily Willingham emilywillinghamphd.com Stomach Endoscopy. Source: Wikimedia Commons Are autism, gut inflammation, and immune issues linked? One recent sponsored supplement published in the journal Pediatrics argues that they are. There’s certainly some evidence, although quite mixed, hinting at a link between immune or gut issues and a subset of people with autism, although which one triggers the other is nowhere near resolved. What one might hope is resolved is that it’s difficult to construct solid scientific arguments on a shaky foundation that incorporates retracted papers. Th Pediatrics GI-autism supplement reflects information derived from a symposium conducted in 2009, one convened to talk about GI problems and autism. The authors are recognizable as those whose interest has very much been focused on autism as inflammation, particularly gut inflammation. The problem has been pinning down specifically what that inflammation might be and where it occurs. To demonstrate that such evidence has been identified,…
Emily Willingham www.emilywillinghamphd.com Word on the street — well, really on a blog from a researcher — is that the writer of the autism/inflammation New York Times op-ed, Moises Velasquez-Manoff, is working on an “annotated” version of the article that will “back up” his claims.” Some annotation would have been useful to begin with; as I noted in my analysis of that op-ed, in many instances, discerning the origin of his information was difficult or impossible. I understand that something that appears originally in print can’t have hyperlinks to appropriate references, but the writer certainly could have beefed up in-text citations (author names, journal publications), at least avoiding the criticism that the piece was unsatisfactorily sourced. Sourcing was not the only issue with that piece, however. Velasquez-Manoff has a book to sell, and that book, like many popular science books, has a narrative that may not necessarily stand up to…
Emily Willingham www.emilywillinghamphd.com Recent headlines have trumpeted an FDA-approved clinical trial of cord blood-derived stem cells for autism, involving 30 children and two i.v. infusions of cells from each child’s own banked cord blood. The stated rationale is a link between inflammation and autism, but I, for one, find that rationale spurious. The inflammation-autism concept found its footing in part thanks to a study that appeared in 2005 [open access] and described findings linking inflammation in the post-mortem brain and autism. The researchers, based at Johns Hopkins, had examined donated brains from 11 people with autism, six of whom were children, and in particular found evidence of what they called an “inflammatory process” in the cerebellums of brains from autistic people. The autistic group in this study was highly heterogeneous in terms of ages, causes of death, and the presence of epilepsy. The Hopkins work and a handful of other…
Emily Willingham www.ThinkingAutismGuide.com Caveat: All findings discussed here were presented at a conference and have not undergone peer review. —- What is the use of animal models? I understand the use of animal models like mice to figure out how gene changes affect outcomes in a whole animal, rather than, say, in cells in a dish. I’ve used them myself. Knocking out a gene of interest in a mouse strain, applying an environmental exposure of interest, observing the behavior of the mouse involved — these tactics can be revealing, sometimes. Say a mouse with a nonfunctioning partner in a gene pair shows a specific behavior — like vocalizing less to its mother — and maybe we can interpret that in human terms as being inhibited social communication and assume the gene in question is involved. The idea is that observing changes linked to the absence or overabundance of a particular…
Shannon Des Roches Rosa www.ThinkingAutismGuide.com TPGA editors at IMFAR 2012 We had a great time at IMFAR; it was important that TPGA be present, given our mission to support evidence-based autism information. I wish more autistic people and people whose lives include autism — personally or professionally — would or could attend. We’ll keep posting summaries and insights for those of you who couldn’t go. Here are my general observations and takeaways. IMFAR 2012 ‘s goal was to present the newest research conducted over last year, with a particular effort to include presenters from outside autism science whose research overlaps with or has implications for autism. This may be why the science often, though not always, seemed a bit softer than 2011. With the result that in some panels, I would just … stop typing after a while, because it was clear the material would not be terribly useful to…
Speaker Dana Marnane and TPGA editor & self-advocate Carol Greenburg This session was geared towards scientists, regarding why it makes sense to learn how to communicate autism science; how to write a a great article, and how to get your quotes in to articles. Alison Singer of the Autism Science Foundation put together and chaired this panel. Any errors or omissions are on us. -SR The speakers: Jane Rubinstein: Media Training 101 Karen Weintraub: Working with the Press Dana Marnane: Communicating Directly with Families and Other Stakeholders JANE RUBINSTEIN, Rubenstein and Associates Data show that only 58% of academic scientists are involved in media outreach — 78% of women, ~40% of men. 5% of participants created more than 50% of media quotes. Scientists queried cited lack of time as main barrier, but large number felt lack of skills in media relation as primary barrier to media participation. What is PR?…
Can’t make IMFAR? Don’t worry, four of our TPGA editors are covering the International Meeting for Autism Research in Toronto, Canada, from Wednesday May 16 through Saturday May 19. Reporting starts with today ‘s 11 AM ET press conference (assuming Shannon & Jen make their flight, which has been delayed, eep — stand by). Panel & presentation coverage will be posted here www.thinkingautismguide.com, via Twitter, and of course on the TPGA Facebook page. Follow us on Twitter at @thinkingautism, @jennyalice, @aspieadvocate, @ejwillingham and @shannonrosa. And if you’re at IMFAR, you can also buy our books at the Autism Science Foundation table — 100% of sales benefit the ASF. If you see one of us, say hi! Science devotees out!