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ASF Strongly Supports Combating Autism Reauthorization Act of 2011

27 May

The Combating Autism Act (CAA) “sunsets” this September. That means that the mandate to focus the U.S. government’s research efforts will end. This doesn’t mean that autism research will stop being funded, but it means that the IACC will end, and a commitment to specific funding levels will sunset.

Here is a statement by the Autism Science Foundation on the re-authorization of the CAA:

The Autism Science Foundation (ASF) strongly supports the Combating Autism Reauthorization Act of 2011 (CARA) introduced today by Senator Robert Menendez (D-NJ) and Senator Mike Enzi (R-WY) in the United States Senate and by Rep. Chris Smith (R-NJ) and Rep. Mike Doyle (D-PA) in the United States House of Representatives.

The new bill reauthorizes the Combating Autism Act of 2006 (CAA), which has played a critical role in advancing autism research and treatment. The original CAA, set to sunset on September 30, 2011, expanded federal investment for autism research through NIH, increased services, diagnosis and treatment through HRSA, and enhanced surveillance and awareness efforts by the CDC. The CAA authorized nearly $1 billion in federal research spending over five years—increasing autism research spending by almost 50 percent. This research has led to improved understanding of the causes of autism and has helped us begin to develop new interventions. Additionally, the research funded through CAA has increased the ability of professionals to more properly screen, diagnose, and treat individuals with autism. The Combating Autism Reauthorization Act of 2011 ensures that the programs established under the original law continue for an additional three years, including CDC surveillance programs, HRSA intervention and training programs, and the Interagency Autism Coordinating Committee (IACC).

The Autism Science Foundation strongly supports this new legislation and urges all members of Congress to act swiftly to pass it into law. We thank Senator Menendez, Senator Enzi, Congressman Doyle and Congressman Smith for their continued focus on the needs of individuals with autism and their families. We look forward to continuing to work with them and the broader autism community to ensure passage of this important legislation. At an IACC meeting earlier this year, the Obama administration pledged to support CARA and to sign the bill into law upon passage.

The Autism Science Foundation is 501(c)3 public charity. Its mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

This is happening now

13 May

In my town, in my county. The same county that has David Cameron amongst its MP’s.

Ageing in autism

6 May

A new paper highlights the issue with geriatric populations in autism.

At present, one of the major challenges is that the majority of the currently older individuals with ASD has not received a formal diagnosis of ASD, and this would be dif?cult to establish using the currently recommended diagnostic assessments, because for many of them, neurodevelopmental history would be hard to obtain. The diagnosis of ASD in children involves both the parents and the child contributing…

You see, nobody working the field of geriatric psychology has any doubt that there is a large population of autistic people within the geriatric population:

Many adult and older subjects with ASD remain undiagnosed and thus are largely unknown to specialist services. [M]any have survived childhood and adulthood by either being fully supported by their family or holding jobs in
protected environment, enabling them to function ‘normally’, and thus escaping the ASD diagnosis. In support for this are the three recent case reports on diagnosing older people with ASD indicating that the standard clinical screenings used in childhood had to be modi?ed and adapted for ?rst?time diagnosis of ASD in older individuals.

As also published recently, it is becoming clearer that there is in fact, no ‘autism epidemic’ and that, in point of fact, research shows:

…nearly one percent of Britons older than 16 years have autism, a rate that is similar to that seen in children. Younger people were no more likely to be affected than older ones, however, which would have been expected if the condition were truly on the increase.

So what can we take from this? Being who I am and having the interests I have I take two main things:

1) Vaccines haven’t caused an epidemic of autism because an epidemic of autism does not in fact exist.

2) There is a large amount of undiagnosed adults with autism who need our help now. They are in community homes (group homes I believe they are referred to as in the US) or living with very elderly relatives. The majority are in situations where their autism is not recognised and not diagnosed. How do we help them?

The University of Newcastle held a Workshop Meeting ‘to reach a consensus on he need for new initiatives in this area.’ and came away with the following points:

1 Prevalence rates of older people with ASD (a prerequisite for planning service needs and placements)
2 Determine life expectancy, behavioural changes and cognitive changes with ageing in ASD
3 Data regarding health problems common in ASD, clinical assessments and treatment of seriously medically ill and frail older individuals with ASD
4 Information whether and how the characteristic clinical symptomatology of ASD change with age
5 Problems diagnosing older individuals with ASD not known to services and development of diagnostic tools for this purpose
6 Diagnosing cognitive impairment and dealing with challenging behaviour in nursing homes
7 Increasing need for advocacy and mental capacity assessments
8 Need to identify services, support and resources for older people with ASD
9 Design of adequate environment for older individuals with ASD
10 Neuroimaging studies in older individuals with ASD
11 Biobanking facilities (cerebrospinal fluid, blood/blood derivates and brain donations) and facilitating research

We should all be aware of the needs of elderly autistic people and try and find a way to help I think. How we should do this is vital. The first step must be the recognition that the idea of an autism epidemic marginalises them.

That’s not for our kids

28 Apr

A recent Guardian Roundtable touched on an interesting subject for those of us who are responsible for children with learning difficulties. The article was written, sourced and published in the UK but I believe it applies everywhere in the world where there are children with learning difficulties.

Just 6.4% of people with learning disabilities are in paid employment and that stark statistic – and the shocking waste of financial (and human) resources behind it – formed the backdrop for a recent Guardian roundtable discussion.

This issue has its root, I believe, in the way we are led to think about our children from birth:

When it comes to setting expectations for a child with learning disabilities, things can start to go wrong the moment they are born. The roundtable heard how health staff use their “breaking bad news” training to counsel parents, leaving them with the impression that there’s not much incentive to look forward to the future.

I remember the day we received the news that our child was autistic with profound learning difficulties. There were 3 calm staff members and a box of tissues on the table. By the time we left, the tissues had been used – and although the staff were gentle, kind and wonderful people who clearly were fond of our child – they too fell into that trap of ‘breaking bad news’ mode. A mode that, by its very tenor, fulfills the expectation of _being_ bad news.

The truth is, in my opinion, that with a little effort from health care agencies we can move from:

staff at one special school who, when the issue of employment was raised, replied: “That’s not for our kids.”

to a de facto position as espoused by agencies like Remploy who are the UK’s leading provider of employment services to people with disabilities.

But we’re not anywhere near that yet. In my own experience too many parents of people with special needs are content to wallow in the comfort of ‘putting it off’ – their children are still young. But consider this – we are far longer a time adults than we are children. Our children need to learn how to function in the world. This won’t be brought about by sham cures and ideaslistic fights against a strawman army. Neither will it be brought about by those who insist on misrepresenting the nature of what autism is to all rather than some.

One speaker summed up the fundamental question underpinning the whole debate: “Do we believe that people with learning disabilities and their families are worth it?”

Are they worth the upheaval and political effort it would take to transform a system that often fails them when it come to finding work?

In any society that claims to be fair, children with learning disabilities surely deserve the same life chances as other young people, the roundtable heard. They should be encouraged to have ambition

Invitation to Upcoming Seminar on Autism Treatment April 21, 2011 – Open to the Public and Available by Webcast

19 Apr

Below is the announcement from the Office of Autism Research Coordination (OARC). This meeting will be in only a couple of days:

The Office of Autism Research Coordination (OARC), NIMH is pleased to be co-sponsoring the National Institute of Mental Health (NIMH) Autism Awareness Month Seminar: “Advances in Treatment Research.” This event is open to the public, both in-person and by webcast.

The seminar will feature presentations by Dr. Susan Swedo and Dr. Rebecca Landa about their research on innovative drug and behavioral treatments for autism spectrum disorder. For speaker biosketches, please see below.

EVENT DETAILS

Date: Thursday, April 21, 2011

Time: 10:30-11:30 am ET

Location: The Neuroscience Center
Conference Room C
6001 Executive Boulevard
Rockville, Maryland 20852

Webcast Live: http://videocast.nih.gov/summary.asp?live=10144

For in-person attendees, seating is on a first come, first served basis. The event will also be videocast live and archived through NIH Videocast: http://videocast.nih.gov/summary.asp?live=10144 for remote access.

Individuals with disabilities who need Sign Language Interpreters and/or reasonable accommodation to participate in this event should contact Christine Kaucher, Kaucherc@mail.nih.gov, 301-443-4058, and/or the Federal Relay (1-800-877-8339).

Please send questions about this event to nimhpress@mail.nih.gov. We look forward to your participation on April 21st!

SPEAKER BIOSKETCHES

Susan Swedo, M.D.

Dr. Susan Swedo is Chief of the Pediatrics & Developmental Neuropsychiatry Branch, NIMH. She is a board-certified pediatrician, who trained at Northwestern University’s Children’s Memorial Hospital in Chicago, Illinois. Dr. Swedo has authored/co-authored over 100 research publications since joining the NIMH in 1986. Her research has focused on diagnosis and treatment of childhood neuropsychiatric conditions, including Sydenham’s chorea, Tourette Syndrome, Obsessive-Compulsive Disorder (OCD), and autism spectrum disorders. Dr. Swedo and colleagues were the first to describe a post-infectious etiology for OCD and define criteria identifying the PANDAS subgroup (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). Current research efforts are directed at identifying biological causes for behavioral syndromes and developing new and more effective therapies. Dr. Swedo received her B.A. degree from Augustana College in 1977 and her M.D. from Southern Illinois University in 1980.

Rebecca Landa, Ph.D., CCC-SLP

Dr. Rebecca Landa is the founder and director of Kennedy Krieger’s Center for Autism and Related Disorders. She is an associate Professor of Psychiatry in the Johns Hopkins University School of Medicine. Dr. Landa obtained her master’s degree at the Pennsylvania State University and her doctorate at the University of Washington. She completed post-doctoral training in Psychiatric Genetics at Johns Hopkins. She is the recipient of the NIMH Shannon Award for excellent and innovative research, as well as the Rita Rudel Prize for Developmental Neuropsychology. Dr. Landa is the recipient of the 2009 Alumni Recognition Award from the College of Human Health and Development of the Pennsylvania State University.

Dr. Landa’s research has focused on neuropsychological, learning, and communication processes in autism across the lifespan. She was the principal investigator of an NIH STAART Center of Excellence, through which she developed and defined the evidence-base for the Early Achievements intervention for toddlers with autism spectrum disorders. She has pioneered research aimed at identifying the earliest signs of autism through the study of infant siblings of children with autism. Dr. Landa is the author of the Pragmatic Rating Scale, used internationally in autism-related research and clinical practice. Her current research focus is on learning processes in autism, as well as early detection of and intervention for autism spectrum disorders (ASD).

Save the Date: Joint Meeting of the IACC Subcommittee on Safety and Services Subcommittees – May 19, 2011

19 Apr

Next month the Interagency Autism Coordinating Committee will be hosting a joint meeting of the Safety and Services subcommittees. The subject will be seclusion and restraints. The announcement is below:

Save the Date: Joint Meeting of Interagency Autism Coordinating Committee (IACC) Subcommittee on Safety and IACC Services Subcommittee

Please join us for a in-person joint meeting of the IACC Subcommittee on Safety and the IACC Services Subcommittee to discuss issues related to seclusion and restraint and autism spectrum disorder (ASD). The meeting will take place on Thursday, May 19, 2011 from 10:00 a.m. to 4:00 p.m. ET. The meeting will also be available for public access by conference call and live webcast.

Meeting location:
Bethesda North Marriott Hotel and Conference Center
5701 Marinelli Road
Bethesda, MD 20852

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

The meeting will also be accessible by conference call and live webcast. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Webcast: http://videocast.nih.gov

If you experience any technical problems with the conference call or webcast, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda and information about other upcoming IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
IACCpublicinquiries@mail.nih.gov

The IACC’s commitment to environmental causation research

14 Apr

The Interagency Autism Coordinating Committee (IACC) met on Monday. I was unable to listen to much of it, although I did get to hear most of the presentation by Joseph Piven. His talk was about the Infant Brain Imaging Study:

Infant Brain Imaging Study (IBIS) Network

Joseph Piven, M.D.
Sarah Graham Kenan Professor of Psychiatry, Pediatrics, and Psychology
Director, Carolina Institute for Developmental Disabilities
Director, Neurodevelopmental Disorders Research Center
University of North Carolina at Chapel Hill

There are some very interesting results coming out on onset of brain overgrowth and timing of onset of autistic symptoms.

There was also, as you might imagine from the title of this post, some reference to environmental causation research. As in, promoting the notion that the IACC hasn’t and doesn’t support environmental causation research. This is far from the truth. Strangely, one doesn’t find news on the research going into environmental causation on the blogs which focus upon environmental causation. One can find it here, though. For example:

US plan for autism research: focus on environmental causation re-emphasized

US proposes $154M in new autism research projects

Effectiveness of virtual reality using Wii gaming technology in children with Down syndrome

11 Apr

I’ve read a lot about the benefits of the iPad over the past year. And, yes, it is a very good thing to add to the arsenal of tools to help disabled people. But the iPad is not the only new technology gadget on the market, and this was made clear in an article: Effectiveness of virtual reality using Wii gaming technology in children with Down syndrome.

Yep. The Wii. Here is the abstract:

Effectiveness of virtual reality using Wii gaming technology in children with Down syndrome.

Wuang YP, Chiang CS, Su CY, Wang CC.

Department of Occupational Therapy, Kaohsiung Medical University, 100 Shih-Chuan 1st Road, Kaohsiung 807, Taiwan. yeepwu@cc.kmu.edu.tw
Abstract

This quasi-experimental study compared the effect of standard occupational therapy (SOT) and virtual reality using Wii gaming technology (VRWii) on children with Down syndrome (DS). Children (n = 105) were randomly assigned to intervention with either SOT or VRWii, while another 50 served as controls. All children were assessed with measures of sensorimotor functions. At post-intervention, the treatment groups significantly outperformed the control group on all measures. Participants in the VRWii group had a greater pre-post change on motor proficiency, visual-integrative abilities, and sensory integrative functioning. Virtual reality using Wii gaming technology demonstrated benefit in improving sensorimotor functions among children with DS. It could be used as adjuvant therapy to other proven successful rehabilitative interventions in treating children with DS.

Here is a big section of the discussion section of the paper. Basically, Standard Occupational Therapy (SOT) helps Down Syndrome (DS) kids do better on fine and gross motor skills. Using Virtual Reality Wii seems to help even more. Gotta love that.

Of the two intervention groups, children who received VRWii therapy demonstrated the largest increase in post-intervention scores on the BOT-2 gross motor subtests. Significant improvement in gross motor function may be accounted for by the accumulated effects from a series of training steps that are structured, progressive, goal-directed, and interrelated. For instance, once the child initially learned to maintain equilibrium on VRWii Sports items, more challenging dynamic tasks such as jumping, striking and catching balls were introduced. VRWii could allow the child to interact with a computer-simulated environment and receive near real-time augmented feedback on performance. After mastering the VRWii tasks, the child was better able to use body feedback to understand the movement outcomes (feedback), anticipate upcoming events (feedforward), and plan alternative strategies (Brooks, 1986). Simultaneously, the child was encouraged to rely more on internal feedback and self-evaluation of performance than external feedback from others and environment. By adjusting the difficult level of Wii Sport items, more mature patterns of motor control emerged from better use of feedback and feedforward mechanisms.

The VRWii group achieved the greatest progress primarily in the BOT-2 fine motor subtests as well. A probable explanation is that success with skilled fine motor tasks relies upon sophisticated motor control and higher-level motor planning. The nature of VRWii therapy promotes an optimal sensory intake by allowing the child to actively explore and organize diverse sensory inputs. An overall improved organization of sensory input may subsequently enhance motor planning and sequencing ability, thereby leading to the improvement in fine motor skills (Humphries, Wright, Snider, & McDougall, 1992). In addition, the improvement in hand function also depended on the child’s ability to modify the patterns of grasping Wii handle according to the different somatosensory input from diverse VRWii Sport items. An essential component of all extremities movements experienced in VRWii Sports is proactive visual and somatosensory control ([Augurelle et al., 2003], Jeannerod, 1986 M. Jeannerod, The formation of finger grip during prehension: A cortically mediated visuomotor pattern, Behavior and Brain Research 19 (1986), pp. 99–116. Abstract | PDF (1331 K) | View Record in Scopus | Cited By in Scopus (130)[Jeannerod, 1986] and [Jeannerod, 1990]), which is responsible for the correct execution of limb movement and the coordination between limbs and vision ([Johansson, 1996] and [Whitney and Wrisley, 2004]). Therefore, tasks involved with visual motor integration of VMI and BOT-2 were also improved by VRWii.

Unexpectedly, the VRWii group alone demonstrated larger increase in all TSIF subtest scores post intervention than SOT that included sensory integration therapy. This result offers direct evidence that children with DS are able to benefit from VRWii therapy to optimize the integrated processing of sensory cues and motor responses. VRWii itself could provide constant opportunities for children to integrate visual, vestibular, and proprioceptive inputs. In particular, significant gains in emotion and behavior subtest of the TSIF after VRWii intervention implies that the playfulness inherent in the VRWii items was able to tap into the children’s inner drive to engage with VRWii therapy. By actively participating in the goal-directed and enjoyable activities, the therapeutic effects could be maximized ([Larin, 2000] and [Parham and Mailloux, 2010]), and the psychosocial needs of children were fulfilled as well (Tye & Tye, 1992). The principle of Wii by using self-initiation, meaningful, and challenging activities in increasing neural plasticity coincided with the principles of sensory integration theory proposed by Ayres ([Ayres, 1972] and [Jacobs and Schenider, 2001]).

IACC meeting on Monday…or not

8 Apr

The IACC has a meeting scheduled for Monday. But, if the US Government shuts down due to budget negotiations, it won’t happen. A great example of good work being sacrificed for politics. I don’t

Reminder: Interagency Autism Coordinating Committee (IACC) Full Committee Meeting

PLEASE NOTE THAT IN THE CASE OF A GOVERNMENT CLOSURE, THIS MEETING WILL NOT TAKE PLACE AND WILL NEED TO BE RESCHEDULED

Please join us for an IACC Full Committee meeting that will take place on Monday, April 11, 2011 from 9:00 a.m. to 5:00 p.m. ET in Washington, DC. Onsite registration will begin at 8:00a.m.

Agenda: The meeting will feature special presentations and activities to celebrate HHS Autism Awareness Month. The IACC will also discuss committee business items including the 2010 Summary of Advances and the 2009 Portfolio Analysis. The agenda is posted at: http://iacc.hhs.gov/events/2011/full-committee-mtg-agenda-April11.shtml.

Meeting location:
The Ronald Reagan Building and International Trade Center
1300 Pennsylvania Avenue, NW
The Polaris Room
Washington, DC 20004

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

The meeting will be remotely accessible by videocast (http://videocast.nih.gov/) and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 888-577-8995

Access code: 1991506

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the webcast or conference call, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, materials and information about other upcoming IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

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.

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