Researchers track down autism rates across the globe

8 Apr

The Simons Foundation blog, SFARI, has always had a good quality of articles. Lately it appears to me that the frequency of articles has increased. One recent article hits a subject that has been a focus of mine for some time: prevalence estimates and how they vary by culture and geography. In Researchers track down autism rates across the globe Virginia Hughes talks to a number of researchers working on expanding autism prevalence studies to more countries. Outside of the US and the UK, autism prevalence studies are somewhat rare. Until fairly recently, prevalence estimates outside of the US and Europe were basically nonexistent.

Ms. Hughes starts with this introduction:

In urban areas of South Korea, some families of children with developmental delays will go to great lengths to avoid a diagnosis of chapae, or autism. They think of it as a genetic mark of shame on the entire family, and a major obstacle to all of their children’s chances of finding suitable spouses.

The stigma is so intense that many Korean clinicians intentionally misdiagnose these children with aechak changae, or reactive detachment disorder — social withdrawal that is caused by extreme parental abuse or neglect.

This won’t come as a surprise for those who have read Roy Richard Grinker’s Unstrange Minds, where Prof. Grinker explores how autism is viewed in various parts of the world, including South Korea.

Prof. Grinker is interviewed, as is his collaborator Dr. Young Shin Kim, and Dr. Eric Fombonne.

Autism prevelance work has been performed or is ongoing in Mexico, South Korea, Brazil, India, South Africa and Oman. Since autism isn’t diagnosed through a biological test, variations in culture can have a significant impact on the test methods.

Ms. Hughes notes:

Language and culture may also affect the way this research is carried out. For instance, the Korean language uses an extensive array of suffixes that denote the relationship between the speaker and the subject. South Korean children with autism have trouble using these social markers, but the Western-based standard tests of autism, such as the Autism Diagnostic Observation Schedule (ADOS), don’t test for this.

Similarly, Grinker points out, healthy children from non-Western cultures may display a trait that ADOS counts as a symptom of autism. In South Korea, for example, making eye contact with an adult is not socially appropriate.

“This is why it’s pretty useful to have [anthropologists] who can translate diagnostic instruments that were designed in one culture and used in another,” Grinker says.

Rather than cut and paste the entire article I will point you back to SFARI for the full piece. It is well worth reading.

End of life care

7 Apr

When this abstract came up it really got me wondering. We hear quite often parents say, “what will happen when I’m gone”. Well, one of the the things that will happen, someday, is that our kids will themselves pass on. I have to say, this is a subject I’ve avoiding considering. The abstract below is for Flemish residential care facilities, but I don’t know how, say, the California Department of Developmental Services handles end of life care. I have the right to sign an advanced directive stating whether I want extraordinary measures used to keep me alive. I have the right to refuse care. I have the ability to refuse care if I feel that my quality of life is not benefited. Will my child have these rights? I don’t want to think about these things. But if I don’t, who will?

J Intellect Disabil Res. 2010 Dec;54(12):1067-77. doi: 10.1111/j.1365-2788.2010.01335.x. Epub 2010 Nov 11.
End-of-life care policies in Flemish residential care facilities accommodating persons with intellectual disabilities.
D’Haene I, Pasman HR, Deliens L, Bilsen J, Mortier F, Vander Stichele R.
Ghent University, Heymans Institute of Pharmacology, Gent, Belgium.
Abstract
OBJECTIVE: This article aims to describe the presence, content and implementation strategies of written policies on end-of-life decisions in Flemish residential care facilities (RCFs) accommodating persons with intellectual disabilities (ID), and to describe training, education and quality assessments of end-of-life care.

METHODS: A cross-sectional mail survey was conducted among general directors of all RCFs accommodating persons with ID (n = 140) in Flanders, Belgium. Institutions were asked to provide us with a copy of their end-of-life care policy documents for content analysis.

RESULTS: Of the 140 institutions, 84 (60%) completed the questionnaire and 25 institutions provided 45 policy documents. Presence of policies on specific end-of-life decisions with a possible life-shortening effect lay between 18% (palliative sedation) and 26% (withdrawing or withholding of life-prolonging treatment). The content analysis showed that the focus in the majority of these policy documents is on palliative care, while end-of-life decisions with a possible life-shortening effect are mentioned but rarely elaborated on. Furthermore, few documents incorporate the distinctive features and needs of persons with ID regarding end-of-life care. On the other hand, half of the institutions trained and educated their professional care providers in some aspects of end-of-life care while one-third assessed the satisfaction of residents and families on several of these aspects. However, more than half reported explicitly that they have no plans for such assessments.

CONCLUSIONS: The presence of end-of-life care policies is low in Flemish RCFs and their content is not very specific for persons with ID.

IAN Network Launches Critical Survey on Autism & Wandering

6 Apr

I received the following message from the Autism Science Foundation. The message discusses the survey to collect data on wandering by autistics. To participate, you need to register at the IAN Project website.

Today, the Interactive Autism Network (IAN) with support from leading autism advocacy groups including the Autism Science Foundation, launched the first major survey to study the experience of wandering and elopement, or escaping, among individuals with autism spectrum disorders (ASD). The tendency of individuals with ASD to wander or “bolt” puts them at risk of trauma, injury or even death, yet information on this critical safety issue is lacking.

Since 2007, the IAN Project, www.ianproject.org, has connected thousands of individuals on the autism spectrum and their families with researchers nationwide to accelerate the pace of autism research through an innovative online initiative housed at the Kennedy Krieger Institute in Baltimore, Maryland. With more than 36,000 participants today, the IAN Project has the largest pool of autism data in the world.

“Although similar behavior has been studied in Alzheimer’s disease and autism advocates identify elopement as a top priority, virtually no research has been conducted on this phenomenon in ASD,” said Dr. Paul Law, Director of the IAN Project at the Kennedy Krieger Institute. “The new survey will provide vital information to families, advocates and policy makers alike as they work to keep individuals with ASD safe.”

The survey will help researchers begin to answer important questions:

* How often do individuals with ASD attempt to elope? How often do they succeed? Under what circumstances?
* Which individuals with ASD are most at risk? At what age?
* What burden do efforts to thwart elopement behavior place on caregivers?
* What can be done to protect individuals with ASD and support their families?

To understand elopement and wandering behavior in ASD, researchers need information both from families of individuals who do and do not wander and elope. In order to determine who is at risk, all families in the U.S. autism community are encouraged to participate in the survey, whether or not their loved one engages in these behaviors. Survey participants must be enrolled in the IAN Project (to register, visit www.ianresearch.org) and be the parent or guardian of a child or dependent adult with ASD.

Due to the urgent need for this information by the autism community, preliminary data will be made available on April 20, 2011, provided the necessary sample size is reached for the research survey.

This survey is funded by the Autism Research Institute, Autism Science Foundation, Autism Speaks and Global Autism Collaboration. The IAN Project is also supported by the Simons Foundation and the National Institutes of Health.

Joint Letter to CDC on Wandering

6 Apr

Below is a letter signed by a number of disability groups, including the Autistic Self Advocacy Network (ASAN) on the issue of the proposed ICD-9 code for wandering. These organizations oppose the addition of the code, for the reasons given below.

This letter was sent to the CDC’s National Center for Health Statistics on Friday, April 1st.

Dear Ms. Pickett:

We are writing as a coalition of organizations representing a wide variety of different constituents in the disabilities field. The constituencies that we collectively represent number in the hundreds of thousands from every stakeholder group in the disability field. We include organizations run by people with disabilities as well as those run by parents, other family members, professionals, providers and many others. Our coalition also includes groups representing a wide array of different kinds of disability categories, including developmental disabilities, mental health conditions, physical disabilities and sensory disabilities. We are writing to express our profound concern about the proposed ICD-9-CM code for wandering discussed at the last meeting of the ICD Coordination and Maintenance Committee on March 9th-10th.

While wandering behavior leading to injury and death represents an important and legitimate safety issue for the disability community, we are concerned that the proposal put forward by CDC’s National Center for Birth Defects and Developmental Disabilities (NCBDDD) is not rooted in high quality research and has significant potential unintended consequences for people with disabilities and family members. We encourage the National Center for Health Statistics to reject an ICD-9-CM coding for wandering behavior as ill-advised and inappropriate.

First, a code for wandering behavior could limit the self-determination rights of adults with disabilities. The wandering coding has no clear operational definition and thus no limits to its application. The proposal makes no distinction between wandering behavior that would qualify for the coding and a rational and willful effort by an individual with a disability to remove oneself from a dangerous or uncomfortable situation. For individuals with significant communication challenges, attempting to leave a situation may be one of the only ways of communicating abuse, a sensorily overwhelming situation or simple boredom. We are concerned that if this coding enters the ICD-9-CM such attempts at communication will be disregarded as medical symptoms.

Second, a code for wandering behavior could lead to serious unintended consequences in professional practice for schools and residential service-provision settings for adults with disabilities. Restraint and seclusion in schools and in residential service-provision settings is already a persistent problem. The application of this coding may result in increased restraint and seclusion as a way of preventing wandering behavior, supplanting required active support, person-centered planning and appropriate supervision. In addition, we are concerned that this coding may enable other forms of overly restrictive interventions and settings. For example, individuals with disabilities who are labeled with a wandering coding may be less likely to be included in the general education classroom, more likely to be placed in large group homes or institutions and more likely to experience chemical restraint. Each of these issues already represents a critical problem for people with intellectual and developmental disabilities that this coding may exacerbate. For example, while only 18% of adults on the autism spectrum receiving developmental disability services have a diagnosis of mental illness, 41% of such individuals are receiving psychotropic medications, suggesting a high incidence of chemical restraint.

Third, the proposed ICD-9-CM code for wandering behavior lacks research support and is not based on evidence or a controlled examination of the issues involved. No research exists to look at wandering as a medical rather than behavioral issue. The research which CDC relies on to make the case for this coding is weak. For example, one of the statistics that CDC cites (that 92% of families of children on the autism spectrum report at least one or more incidents of wandering) comes not from a high quality research study, but instead from an online poll on the website of an advocacy organization. This is not in line with the high standards for research and evidence that the CDC bases its other decision-making on.

While we respect the good intentions behind the creation of this coding, we firmly believe that there are other ways of accomplishing the positive objectives of this coding without placing people with disabilities and our families at risk of the same unintended consequences. Other methods of data collection around wandering can and are being pursued by both public and private funders. In addition, a wide variety of human services and educational approaches hold significant promise in addressing the issue of dangerous wandering behavior outside of a medical context. As a result, we strongly urge you to consider and reject the proposed ICD-9-CM coding for wandering behavior.

Regards,

Access Living
ADAPT
American Association of People with Disabilities
American Association on Intellectual and Developmental Disabilities
Autistic Self Advocacy Network (ASAN)
The Arc of the United States
Brooklyn Center for the Independence of the Disabled (BCID)
Center for Self-Determination
Coalition for Community Integration
Collaboration for the Promotion of Self-Determination
Council of Parent Attorneys and Advocates (COPAA)
Disability Rights Education and Defense Fund (DREDF)
Disabled in Action of Greater Syracuse
Disabled in Action of Metropolitan New York
Disabled Queers in Action
Disability Network of Michigan
Disabilities Network of New York City
Hearing Loss Association of America (HLAA)
Independent Living Center of the Hudson Valley
Independent Living Council of Wisconsin
Independent Living Coalition of Wisconsin
Little People of America (LPA)
Kansas ADAPT
Montana ADAPT
National Association of the Deaf (NAD)
National Association of State Directors of Developmental Disability Services (NASDDDS)
National Association of the Physically Handicapped
National Council on Independent Living (NCIL)
National Organization of Nurses with Disabilities
New York Association of Psychiatric Rehabilitation Services
Options for Independence, Inc.
Pineda Foundation for Youth
Self Advocates Becoming Empowered (SABE)
Silicon Valley Independent Living Center
Statewide Parent Advocacy Network of New Jersey (SPAN)
SKIL Resource Center of Kansas
TASH
Topeka Independent Living Center
United Spinal Association
Wisconsin Board for People with Developmental Disabilities

Autism and Wandering

6 Apr

One issue which has been getting much discussion lately is that of wandering. Elopement. Autistics (and others) who get up and leave the home, classroom, or other place and wander. Anecdotally, it is more common amongst autistics. It is one of the first behaviors I was told about after hearing a diagnosis for my kid. One the one hand it is dangerous. A person can get lost or get into traffic or another unsafe situation. On the other hand, wandering can be an attempt to escape an inappropriate or harmful setting. While I hate presenting topics as unresolved “on the one hand/on the other hand” situations, there is a time critical discussion going on: should a new diagnostic code be implemented (ICD-9 code) for wandering. So I am presenting two pieces today: one by ASAN and other groups presenting their arguments against the ICD-9 code, and one by the Autism Science Foundation and others calling for participation in an IAN survey and support for the ICD-9 code.

My view so far is this:

As a means to collect data on wandering, I doubt this will be of much use, especially in the short term. Unless the code is a means to some end (some supports to address the cause of wandering), I don’t think the code will be used by physicians. If autism itself gives us any experience, we will see a multi-year increase in wandering. A wandering “epidemic” if you will. However, and more importantly to me, without this code, will there be funding from insurance and other sources to provide those supports?

There is much discussion of how prevalent wandering is amongst autistics. I don’t know if that is really the point. If wandering “only” occurs in, say, 10% of the population, does that mean there is no need for the code and for, hopefully, improved supports? No. If wandering is a major problem, one which puts some people at great risk of harm or death, that is where the focus should lie.

As I said, I am still forming my views on this and I welcome a good discussion.

Brian Deer: Stomping at the Savoy

5 Apr

The Press Awards ceremony is ongoing at the Savoy. Brian Deer was nominated for and won the Specialist Journalist of the Year award for his work on MMR. He was cited for perseverance and for righting a wrong.

Brian Deer, of course, is the journalist who broke the stories surrounding Andrew Wakefield’s MMR research.

and video:

Making Sense of Autistic Spectrum Disorders

5 Apr

There are so many “autism” books out there for parents new to the diagnosis. Unfortunately many are just not good. We’ve spent a lot of time here discussing the problems with books that promote “mommy instinct” or therapies untested for safety or efficacy. Warning parents off a book isn’t the same thing as giving them some idea of where to turn for good information. Recently I was loaned a book by friend and fellow blogger Liz Ditz (of the I Speak of Dreams blog): Making Sense of Autistic Spectrum Disorders by James Coplan.

I read the first chapter and a couple of bits here and there and came away thinking: this could be a good resource. I plan to go through the book in pieces over time, but I am willing to start recommending it already.

There are a few things I would probably word differently, and I certainly haven’t seen it all yet. It isn’t a quick read, and a new parent may not want to go through it from start to finish linearly. But there are good sections to jump to, refer back to and the like.

Disclosure: I’ve asked for a review copy so I can return this one to Liz.

Robert MacNeil Returns to NewsHour for ‘Autism Today’ Series

5 Apr

Robert MacNeil of the PBS NewsHour has produced a series on autism for autism awareness month. He’s given an interview about the project on the NewsHour website.

For the first time in more than 15 years, Robert MacNeil is returning to the program he co-founded, with a major series of reports on “Autism Today.” The subject that drew him back is one that resonates deeply with his own family and many others. Robin’s six-year-old grandson, Nick, has autism.

Here is the video from that interview:

http://www-tc.pbs.org/video/media/swf/PBSPlayer.swf

Watch the full episode. See more PBS NewsHour.

A rundown of the episodes was given in the first announcement of the series. The series looks to cover a very wide range of topics. Mr. MacNeil notes that he has a producer with experience in covering autism: Caren Zucker. She wrote the piece for The Atlantic on Donald T, the first of Dr. Kanner’s patients reported in his original paper on Autism. Amongst her other projects is Christmas with My Autistic Son in the Daily Beast. There’s some very good work there.

As noted above, Mr. MacNeil also has worked from a personal connection: his grandson. According to an email I received, over the weekend Mr. MacNeil’s daughter came forward about the project in a post on the Yahoo group, EOHarm:

Hi, my name is [A] MacNeil and I have been a listmate here for a long while. This series was born out of 3 yrs of conversations with my dad after my son Nick regressed into Autism following his MMR, Dtap and Hib at a 15 month well-baby visit. It was a long journey getting this program off the ground and some really terrific experts in our community helped to convince my dad that this was really imperative. The program is no where near as hard driving and aggressive as I had intended but, in it’s own quieter way, some key points are made. In the first segment I discuss Nick’s regression post vaccination, we make the point very clearly that he is physically sick and that we have been terribly let down by the mainstream medical establishment, and that when we get to decent medical help Nick starts to get better. I would have loved to have highlighted the work we do with our DAN, whom I adore, but that MD asked not to be named. They would rather focus on treating children and do not want a lot of media attention. I haven’t watched the other segments yet, so I can’t comment on their content. I hope you’ll watch. It was very sentimental to see my dad on camera with my kids at this later stage in his career.

Thanks so much,.

Based on that post, it appears as though Ms. MacNeil is the owner of the My Vaccine Injured Child blog, which was started after she attended the Green our Vaccines rally.

I still look forward to this series. Perhaps not with the same enthusiasm I had a few days ago, but I look forward nonetheless.

Kim Stagliano’s daughter getting very rough justice

4 Apr

Please visit Age of Autism, read the story and sign the petition.

Loving Lampposts, a review

4 Apr

Loving Lampposts is a new film about autism by filmmaker and autism parent Todd Drezner. You get a good idea of the direction of the movie from the subtitle–Loving Lampposts, living autistic. I “watched” the film. As in, it’s hard to find an hour and a half solid to watch something through. Instead I watched a little on TV and listened and watched what I could on my computer as I worked. I really wish I had blocked out the full hour and a half to watch it in one sitting as it is quite well done. I agree with Shannon Rosa in her review: this is a film I’ve waited for to fill many roles. It is a film that I wish I had available when we got the diagnosis for our kid. It is a film I’d like to recommend to people who ask about autism.

Todd Drezner narrates the film. He does a good job of using narration lightly. He mostly narrates to make the transitions between the segments of the film. In general, he lets the people–the autistics, the parents, the professionals–in the film present the various ideas.

The first part of the film introduces the ideas of autism as a medical condition and neurodiversity. The vaccine discussion does come up later in the film. It is great to see the vaccine discussion not as parents vs. a mainstream medical establishment. It will come as no surprise to readers here that many parents do not subscribe to the vaccine-injury model, and Mr. Drezner presents them in their own voices. Some of those parents featured in the film include Kristina Chew and Roy Richard Grinker.

The discussion of cure and vaccines needs to be addressed. But what makes the film really work is the time spent on autistics. Autistic kids and a good amount of time with autistic adults. Stephen Shore talks about his life and his work in education. Also featured autistics include Barbara Moran, Kassiane Sibley and Sharisa Kochmeister.

There are great segments with Lyndon and his mother Lila Howard. Lyndon was born in the early 1950’s, during the “childhood schizophrenia” and “refrigerator mother” era. He’s now living in his own apartment, with his mother still as his primary caregiver.

Dora Raymaker is also featured, communicating with AAC through her computer.

Director Todd Drezner is not heavy handed, but he dispels myths. Here are two of them: Neurodiversity is not all about “high functioning” autistic adults. Neurodiveristy advocates do not deny that autism is a disability.

I’ve never wanted to attend an autism-parent/biomed convention. But Loving Lampposts really makes me want to put into action my desire to attend Autcom or Auttreat. Loving Lampposts was partially filmed at Autcom 2007.

As I wrote above, I wish I had this film years ago. I wish I could have seen it. I wish I could have offered it to the many people who have asked questions about autism. I’ll certainly be telling my family and friends about this and offering it to people asking about autism.

Disclosure: I asked for and was provided with a copy of the DVD to screen. I am very grateful that this was made available to me, but I am not compensated in any way for purchases of the film. With that said: You can purchase the film from Amazon.com, or from the Loving Lampposts website. It isn’t available yet on Netflix, but you can put it in your queue and give them the idea that they should make it available.

← Older Entries
Newer Entries →