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Brief Report: Comparability of DSM-IV and DSM-5 ASD Research Samples

1 Oct

Probably the most hotly debated topic in autism diagnosis and research this year has involved what changes may occur when the DMS-IV gives way to the DSM-5. The DSM is the Diagnostic and Statistical Manual of Mental Disorders and is used as a basis for determining diagnoses such as autism. There have been discussions (both online and elsewhere) claiming that the DSM is not only going to reduce the fraction of the population diagnosed autistic, but that it is designed to do so. People from many parts of the autism communities are concerned including autistics, parents and professionals.

A few studies have already been published, but more data are needed and welcome. This study focuses on “high functioning ” autistics. I need to get the paper to check the age ranges of the individuals in the study. So far there has been little or no data on autistic adults. That said, this study presents the result that of 498 autistics who currently meet the diagnosis criteria for autism (for research purposes), 93% of them will meet the criteria under the DSM-5.

Such a study can not explore how many who did not get a diagnosis under DSM-IV would get one with DSM-5.

Brief Report: Comparability of DSM-IV and DSM-5 ASD Research Samples

Diagnostic and Statistical Manual (DSM-5) criteria for ASD have been criticized for being too restrictive, especially for more cognitively-able individuals. It is unclear, however, if high-functioning individuals deemed eligible for research via standardized diagnostic assessments would meet DSM-5 criteria. This study investigated the impact of DSM-5 on the diagnostic status of 498 high-functioning participants with ASD research diagnoses. The percent of participants satisfying all DSM-5-requirements varied significantly with reliance on data from the Autism Diagnostic Observation Schedule (ADOS; 33 %) versus Autism Diagnostic Interview-Revised (ADI-R; 83 %), highlighting the impact of diagnostic methodology on ability to document DSM-5 symptoms. Utilizing combined ADOS/ADI-R data, 93 % of participants met DSM-5 criteria, which suggests likely continuity between DSM-IV and DSM-5 research samples characterized with these instruments in combination.

Below is a list of papers listed in pubmed on the DSM-5 and autism. I’ve highlighted some of the abstracts (or parts of abstracts) which show the sorts of results which are causing concern within the communities.

What the DSM-5 Portends for Research, Diagnosis, and Treatment of Autism Spectrum Disorders.

Editorial Perspective: Autism Spectrum Disorders in DSM-5 – An historical perspective and the need for change.

A comparison of diagnostic criteria on the Autism Spectrum Disorder Observation for Children (ASD-OC).
“Conclusion: Many children who are currently diagnosed with ASD may no longer be diagnosed, despite having significant impairments roughly equal to those who meet DSM-5 criteria.”

Postponing the Proposed Changes in DSM 5 for Autistic Spectrum Disorder Until New Scientific Evidence Adequately Supports Them.

Exploring the Proposed DSM-5 Criteria in a Clinical Sample.

The proposed DSM-5 criteria for Autism Spectrum Disorder (ASD) depart substantially from the previous DSM-IV criteria. In this file review study of 131 children aged 2-12, previously diagnosed with either Autistic Disorder or Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), 63 % met the new DSM-5 ASD criteria, including 81 % previously diagnosed with Autistic Disorder and only 17 % of those with PDD-NOS. The proportion of children meeting DSM-5 differed by IQ grouping as well, with higher rates in lower IQ groups. Children who did meet criteria for ASD had significantly lower levels of cognitive and adaptive skills and greater autism severity but were similar in age. These findings raise concerns that the new DSM-5 criteria may miss a number of children who would currently receive a diagnosis.

Loss of autism in DSM-5.

How does relaxing the algorithm for autism affect DSM-V prevalence rates?

Although it is still unclear what causes autism spectrum disorders (ASDs), over time researchers and clinicians have become more precise with detecting and diagnosing ASD. Many diagnoses, however, are based on the criteria established within the Diagnostic and Statistical Manual of Mental Disorders (DSM); thus, any change in these diagnostic criteria can have a great effect upon children with ASD and their families. It is predicted that the prevalence of ASD diagnoses will dramatically decrease with the adoption of the proposed DSM-5 criteria in 2013. The aim of this current study was to inspect the changes in prevalence first using a diagnostic criteria set which was modified slightly from the DSM-5 criteria (Modified-1 criteria) and again using a set of criteria which was relaxed even a bit more (Modified-2 criteria). Modified-1 resulted in 33.77 % fewer toddlers being diagnosed with ASD compared to the DSM-IV, while Modified-2 resulted in only a 17.98 % decrease in ASD diagnoses. Children diagnosed with the DSM-5 criteria exhibited the greatest levels of autism symptomatology, but the Mod-1, Mod-2, and DSM-IV groups still demonstrated significant impairments. Implications of these findings are discussed.

Brief report: an exploratory study comparing diagnostic outcomes for autism spectrum disorders under DSM-IV-TR with the proposed DSM-5 revision.

DSM-IV vs DSM-5 diagnostic criteria for toddlers with autism.

CONCLUSION:
The proposed DSM-5 will result in far fewer persons being diagnosed with ASD. These results replicate findings from two previous studies, with older children/adolescents and adults. As a result of these new criteria, far fewer people will qualify for needed autism services.

Annual research review: re-thinking the classification of autism spectrum disorders.

Sensitivity and specificity of proposed DSM-5 diagnostic criteria for autism spectrum disorder.

CONCLUSIONS:
Proposed DSM-5 criteria could substantially alter the composition of the autism spectrum. Revised criteria improve specificity but exclude a substantial portion of cognitively able individuals and those with ASDs other than autistic disorder. A more stringent diagnostic rubric holds significant public health ramifications regarding service eligibility and compatibility of historical and future research.

Proposed criteria for autism spectrum disorder in the DSM-5.

—
By Matt Carey

Excess Mortality and Causes of Death in Autism Spectrum Disorders: A Follow up of the 1980s Utah/UCLA Autism Epidemiologic Study

27 Sep

Long term studies are an under explored area in autism. Research interest in autism has grown a great deal and understanding of autism has grown. Thus we have few studies from the past to form the basis for long term studies and the populations may not represent current populations.

The Utah/UCLA study from the 1980’s does present one possibility for long term follow up. The study was performed when the DSM III was still in effect, for example of how the population selected then was different. A recent study showed that there were autistics missed then, even among the intellectually disabled.

With that in mind, there is still value in exploring long term outcomes in this group. In particular, the present study explores the increased mortality of autistics. In particular, mortality due to “iratory, cardiac, and epileptic events” were more common among autistics, who died nearly 10 times more often (by roughly age 30) than non autistics.

Here is the abstract

This study’s purpose was to investigate mortality among individuals with autism spectrum disorders (ASD) ascertained during a 1980s statewide autism prevalence study (n = 305) in relation to controls. Twenty-nine of these individuals (9.5 %) died by the time of follow up, representing a hazard rate ratio of 9.9 (95 % CI 5.7-17.2) in relation to population controls. Death certificates identified respiratory, cardiac, and epileptic events as the most common causes of death. The elevated mortality risk associated with ASD in the study cohort appeared related to the presence of comorbid medical conditions and intellectual disability rather than ASD itself suggesting the importance of coordinated medical care for this high risk sub-population of individuals with ASD

More long term, longitudinal and retrospective, work is needed to fill in some major knowledge gaps. Some is ongoing but we need to not only mine the data from the past but also law the groundwork for future long term studies.

—
By Matt Carey

Adverse reaction data for alternative therapies for autism?

21 Sep

Edit–Note that ARI has changed their webpage language:

One factor of alternative medicine is that it is impossible to make an informed decision on risks and benefits. Without data on either, all one has is anecdotes. This is especially troublesome, to me at least, when it comes to risks. What are the adverse events associated with a given alternative medicine treatment? This became clear when an industrial chelator was offered as a “supplement” and the proprietor of that business was quoted as telling his clients to report adverse reactions to him, avoiding the FDA.

The Autism Research Institute (ARI) has promoted alternative therapies for autism for some time, even maintaining a list of therapies with survey results claiming high effectiveness. They also maintain a page on adverse reactions. But without any emphasis on informing people about adverse reactions to alternative therapies.

Here is a quote from that page:

Unfortunately, before the drugs are prescribed to their children, parents are not usually informed of the possible dangers related to the drugs. ARI urges all practitioners to inform their clients about the possible adverse effects associated with every treatment or medication that they recommend to their clients.

Many individuals on the spectrum suffer from seizures, and most of the drugs commonly prescribed to these individuals may lower the threshold for having seizures. We have also listed those drugs that are associated with seizures along with a link.

If your son/daughter experiences side effects from receiving prescribed medications, please contact the FDA at: http://www.fda.gov/medwatch or call 1.800.FDA.1088 (1.800.332.1088).

In addition, parents can learn more about possible side effects, as well as benefits, associated with various treatments by reviewing the results from our parent treatment survey. The survey findings are based on over 26,000 responses, and include a large number of biomedical interventions, including drugs, nutritional supplements, and diet.

One is given the information about how to report a reaction from “prescribed medications”, but not for alternative therapies or supplements. Or so they present it. The page they link to isn’t the direct reporting site. Instead, one must follow a link on that page to https://www.accessdata.fda.gov/scripts/medwatch/medwatch-online.htm. There you are informed that you may “Click the BEGIN button to report serious adverse events for human medical products, including potential and actual product use errors and product quality problems associated with the use of:”

FDA-regulated drugs,
biologics (including human cells, tissues, and cellular and tissue-based products)
medical devices (including in vitro diagnostics)
special nutritional products and cosmetics

emphasis added.

So, the same site where ARI sends people to report “side effects from receiving prescribed medications” can be used (and should be used) to report side effects from alternative therapies which are not prescribed. But parents are not encouraged to make such reports. Which, again, limits the public’s ability to estimate the risks involved with these therapies.

On the ARI page are links to adverse reactions (both ARI’s own discussions as well as links to external sites which publish accepted adverse reaction information) for various therapies. Will you learn about the “occasionally severe” skin reactions that occur with the chelator DMSA? No. Deaths from IV chelation? No. Will you hear about the autistic child who was a test case for the Autism Omnibus Proceeding who appeared to have significant adverse reactions to chelation? No. No one in the public would have heard about that were it not for the Omnibus.

ARI makes a major distinction between “Drugs” and “Biomedical/Non-Drug/Supplements” as therapies. Is this a valid distinction? ARI lists “Transfer Factor” as one of their “BIOMEDICAL/NON-DRUG/SUPPLEMENTS”, claiming that autistics “got better” 5.9 times more often than they “got worse”. But no data on what adverse reactions there are. No links. “Transfer Factor” is not a drug to ARI. It is worth noting that it was a drug to Andrew Wakefield. He attempted to patent Transfer Factor as a therapy and as an alternative to the standard measles vaccine.

The question of whether alternative therapies are presented such that one can make an informed decision is an important one. Raising the question is generally guaranteed to garner the reaction: “he’s anti-cure”, or “he’s against treating autism” or the like. But clearly the argument here is simple: are people being given the ability to make an informed decision about alternative medical treatments used for autism? The answer is simple as well: no. They are not.

—
By Matt Carey

ARC: Action Alert: Call Today and Help Protect Federal Disability Programs

20 Sep

Last year the United States legislature avoided tough decisions by putting automatic spending cuts into the budget. The phrase “kick the can down the road” was common in the press in discussing the budget negotiations which were ongoing and now we are “down the road”: those cuts are slated to start in 2013. After the elections, I’ll point out. Discretionary programs will see substantial cuts unless the law is changed. Discretionary programs include special education and services for the disabled.

The ARC has put out an action alert to gather support to change the law to reduce those cuts:

Call Today: Help Protect Federal Disability Programs Take Action!
Today is Non-Defense Discretionary (NDD) Call Day

Take Action!

Background

While The Arc has been successful so far in its advocacy to prevent cuts to the Medicaid program, many other essential programs are facing severe reductions. The federal discretionary programs that people with disabilities rely upon to live in the community (early intervention, special education, supported employment, housing, transportation, and more) are slated for unprecedented cuts starting in 2013.

Last year’s Budget Control Act (BCA) will require non-defense discretionary programs to be cut dramatically, unless Congress changes the law. First, they will be cut by about 6% over a decade through the BCA’s spending caps. Then they are scheduled to be cut by an additional 8 % through the BCA’s across-the-board cuts (known as “sequestration”) starting in early 2013. The individual programs we care most about could possibly be cut by even greater amounts or eliminated entirely!

Examples of individual programs that could be cut are:

IDEA State Grant that assists the states in meeting the costs of providing special education and related services to children with disabilities.

DD Act Projects of National Significance (PNS) that enhance the independence, productivity, inclusion, and integration of people with developmental disabilities.

CDC National Center on Birth Defects and Developmental Disabilities that sponsors research and interventions to help children with disabilities to develop and reach their full potential, and promotes health and well-being among people of all ages with disabilities.

Section 811 Supportive Housing for People with Disabilities that creates affordable, accessible housing for low-income non-elderly people with the most serious disabilities to help them live independently in the community.

Take Action

Please call your Members of Congress and remind them of the importance of these critical programs. Click on the Take Action link above to get your Members’ office phone numbers.

Autism Spectrum Disorders: What Every Parent Needs to Know

12 Sep

For some time now I’ve been looking for books to recommend. Kev Leitch (who founded Left Brain/Right Brain) gathered a good collection of books. One of my favorites has been The Thinking Person’s Guide to Autism, which has been discussed here at Left Brain/Right Brain a few times. It is a book I wish I had when my kid first was diagnosed. It is a collection of essays on various topics by autistics, parents and professionals. Another type of book I’ve been looking for is one by professionals. Specifically medical professionals. One I will get to soon is Making Sense of Autistic Spectrum Disorders: Create the Brightest Future for Your Child with the Best Treatment Options. Another came out just recently, and that is the subject of this discussion: Autism Spectrum Disorders: What Every Parent Needs to Know.

The book is published by the American Academy of Pediatrics (AAP). It is edited by Alan I. Rosenblatt MD FAAP and Paul S. Carbone MD FAAP. Both have extensive experience with special needs children. The book has an extensive list of contributors, including parents. I need to go through it more thoroughly to see if they include autistic voices as well.

The authors’ description of the book is:

From autism and Asperger’s syndrome through pervasive developmental disorders, this authoritative reference from the leading publisher in pediatric health care examines how autism spectrum disorders (ASDs) are defined and diagnosed and reviews the most current behavioral and developmental therapy treatments available. Through this evidence-based guide, which reflects the new diagnostic thinking from the American Psychiatric Association, parents and caregivers will learn about the symptoms and the incidence of ASDs, screening tools, the roles of complementary and alternative medicine, and what to expect as these children grow into adolescence and beyond. They will also gain insight into how to tap into educational resources and community services and how to access care. In addition to the detailed findings and expert advice, real-life stories included in each chapter help diffuse the isolation many parents experience and offer inspiration and support.

Autism Spectrum Disorders: What Every Parent Needs to Know is very accessible–well written and short sections one can read in a reasonable amount of time. My own experience was that I did not really have the time nor the attention span to read thick books cover-to-cover soon after my kid’s diagnosis. A book such as this which is thorough but also can be read either in whole or in parts in a reasonable amount of time is a good place to start. It’s about $10 on Amazon.

The book starts with the basics (what are autism spectrum disorders?) goes through some of the big questions (e,g what causes autism spectrum disorders?), behavioral and educational options, medications, complementary and alternative medicine (CAM), and practical strategies for the parent.

It is difficult to navigate all the sources of information that come at a parent who has just found out his/her kid is autistic. Not all of that information is good. I certainly wish I had this book when our kid was diagnosed.

Autism Spectrum Disorders: What Every Parent Needs to Know comes out October 1st. For the record, I asked the AAP for a review copy to discuss in advance of publication.

—
By Matt Carey

Autism Science Foundation: “In 2 Minutes, Help Us Win $10K! Vote For Autism Science”

12 Sep

The Autism Science Foundation funds, well, autism science. They are working to win a $10,000 grant from Chase in the Chase Community Giving contest. ASF discusses this on their blog as In 2 Minutes, Help Us Win $10K! Vote For Autism Science

The idea is simple–vote for them and if they get enough votes they get $10,000. Costs you nothing but a couple of minutes of your time. (If you are using Facebook, you have a couple of minutes to spare!)

Here are some questions and answers about the contest from the ASF page:

How do I vote for ASF?
On the Chase Community Giving voting page, search for “Autism Science Foundation” to find ASF’s page then click Vote and follow instructions to share with your friends to vote again!

How many times can I vote?
All Facebook users are eligible for one vote during the contest, which ends September 19th, and an additional vote for “sharing” your vote with your Facebook friends. Finally, Chase card holders are eligible for a 3rd vote. All votes may be cast for the same charity.

How do I access additional votes?
Chase cardholders may cast their additional vote here. Also, don’t forget to “share” your vote with your friends after you’ve voted to gain an additional vote!

Thanks for Chasing Down the Causes of Autism with Autism Science Foundation!

If you missed the links above, you can vote for them using this link to Facebook.

Interagency Autism Coordinating Committee’s (IACC) Services Research and Policy Subcommittee Conference Call and Webinar

10 Sep

The Services Research and Policy Subcommittee of the U.S. Interagency Autism Coordinating Committee (IACC) will hold a conference call on Wednesday. More details can be found here.

Interagency Autism Coordinating Committee’s (IACC) Services Research and Policy Subcommittee Conference Call and Webinar

Please join us for a conference call and webinar of the IACC’s Services Research and Policy Subcommittee on Wednesday, September 19, 2012 from 10:00a.m. to 2:00p.m. ET. The subcommittee will discuss plans for developing a 2012 IACC Strategic Plan Progress Update that will describe recent progress that has been made in the autism field and identify remaining gap areas in research.

The phone number and access code for the call and the webinar link are provided below. 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: 800-369-3130
Access code: 1524980

Webinar Access
https://www2.gotomeeting.com/register/427830826

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 below at least five 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, 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 6182A
Rockville, MD 20852
Phone: 301-443-6040
IACCpublicinquiries@mail.nih.gov

—
By Matt Carey

Note: I serve as a public member to the IACC but all comments here and elsewhere are my own.

Autism spectrum disorders in Hispanics and non-Hispanics

5 Sep

Most autism research has focused on America and Europe. Not all, but most. Within the U.S. there remain populations who are under identified and under served. Racial and ethnic minorities are examples of such populations.

Within California, where the CHARGE Study is ongoing, Hispanics are qunder represented in administrative counts (e.g. Special Education).

This is an area that has struck me as a topic that needs attention. That needs change. Which is why I was both pleased to see and unsurprised by a press release last week from U.C. Davis’ MIND Institute:

DIAGNOSIS OFTEN MISSED FOR HISPANIC CHILDREN WITH DEVELOPMENTAL DELAY, AUTISM Broader outreach on developmental milestones needed

Yes, many Hispanic children do go undiagnosed, even today. And, yes, we as a people should be doing more to remedy that.

Robin Hansen of MIND is quoted as saying:

“That so many children are slipping through the cracks is disheartening,” Hansen said. “The differences between developmental disabilities can be subtle but important and involve distinct treatment pathways. We need to make sure that all children are getting routine developmental screening, early diagnosis and intervention so they can achieve their fullest potential.”

Interestingly the primary focus of the abstract for the study is not the underdiagnosis aspect but the result that for bilingual families, the autistic children score lower on the Mullen Scales of Early Learning.

Robin Hansen again:

“Our results emphasize the importance of considering cultural and other family factors such as multiple language exposure that can affect development when interpreting clinical tests, even when they are conducted in the child’s preferred language,” said Robin Hansen, chief of developmental-behavioral pediatrics at UC Davis, director of clinical programs with the MIND Institute and a study co-author.

The abstract:

Autism spectrum disorders in Hispanics and non-Hispanics

Objectives To compare differences in autism between Hispanic and non-Hispanics. We also examined the relationship between multiple language exposure and language function and scores of children.

Methods The Childhood Autism Risks from Genetics and the Environment (CHARGE) study is an ongoing population-based case-control study with children sampled (n=1061) from three strata: those with autism (AU) or autism spectrum disorder (ASD); developmental delay (DD); or the general population (GP).

Results Non-Hispanic cases demonstrated higher cognitive composite scores for the Mullen Scales of Early Learning (MSEL). There were significant associations between multiple language exposure and MSEL subscales for receptive language and expressive language, in both cases (AU/ASD) and TD controls, but not DD controls. Results of multivariate regression analyses suggest several predictors to be associated with lower Mullen expressive language scores including: diagnosis of ASD/AU, speaking to the child in a second language 25-50% of the time and Hispanic ethnicity; while maternal college education was associated with higher scores.

Conclusion Overall, the CHARGE Hispanic group displayed more similarities than differences compared to non-Hispanics in terms of autistic phenotypes and maladaptive & adaptive scores for cases. The relationship between multiple language use and cognitive scores warrants a closer look.

—
By Matt Carey

Children with neurologic disorders at high risk of death from flu

29 Aug

Sometimes I get taken to task for spending too much time discussing vaccines. The thimersal and MMR hypotheses failed. Why keep discussing vaccines on what is primarily an autism focus site?

Well, for one thing, public health does involve us all. Just in general.
But there really is another level. Many autistics are more medically fragile than the average.

People die from influenza. Even in the relatively clean United States with its modern health care. People die. Amongst those are a disproportionate number of children with neurological disorders.

Below is a CDC press release on deaths from flu. Here for emphasis:

Of the 336 children (defined as people younger than 18 years) with information available on underlying medical conditions who were reported to have died from 2009 H1N1 flu-associated causes, 227 had one or more underlying health conditions. One hundred forty-six children (64 percent) had a neurologic disorder such as cerebral palsy, intellectual disability, or epilepsy. Of the children with neurologic disorders for whom information on vaccination status was available, only 21 (23 percent) had received the seasonal influenza vaccine and 2 (3 percent) were fully vaccinated for 2009 H1N1.

People and groups that spread misinformation about vaccines put everyone at risk and people with neurological conditions even more so.

They put my kid at risk. As is often discussed, some people don’t get immunity from vaccines. The only way I’ll know if my kid isn’t protected will be when an outbreak occurs.

I love the nurses in our local pediatric ward. But they dont want to see us again and I don’t want to see them again unless it is at a local Starbucks (in which case I pick up their tab. )

Children with neurologic disorders at high risk of death from flu
Health care and advocacy groups join to protect children most vulnerable to influenza

A disproportionately high number of children with neurologic disorders died from influenza-related complications during the 2009 H1N1 pandemic, according to a study by scientists with the Centers for Disease Control and Prevention. The report in the journal Pediatrics underscores the importance of influenza vaccination to protect children with neurologic disorders. CDC is joining with the American Academy of Pediatrics, Families Fighting Flu and Family Voices to spread the message about the importance of influenza vaccination and treatment in these children.

The Pediatrics study looked at influenza-related deaths in children during the 2009 H1N1 pandemic based on data submitted to CDC from state and local health departments. The number of pediatric deaths associated with 2009 H1N1 virus infection reported to CDC during the pandemic was more than five times the median number of pediatric deaths that were reported in the five flu seasons prior to the pandemic. Sixty-eight percent of those deaths occurred in children with underlying medical conditions that increase the risk of serious flu complications.

Of the 336 children (defined as people younger than 18 years) with information available on underlying medical conditions who were reported to have died from 2009 H1N1 flu-associated causes, 227 had one or more underlying health conditions. One hundred forty-six children (64 percent) had a neurologic disorder such as cerebral palsy, intellectual disability, or epilepsy. Of the children with neurologic disorders for whom information on vaccination status was available, only 21 (23 percent) had received the seasonal influenza vaccine and 2 (3 percent) were fully vaccinated for 2009 H1N1.

“We’ve known for some time that certain neurologic conditions can put children at high risk for serious complications from influenza,” said Dr. Lyn Finelli, chief of the surveillance and outbreak response team in CDC’s Influenza Division. “However, the high percentage of pediatric deaths associated with neurologic disorders that occurred during the 2009 H1N1 pandemic was a somber reminder of the harm that flu can cause to children with neurologic and neurodevelopmental disorders.”

“Flu is particularly dangerous for people who may have trouble with muscle function, lung function or difficulty coughing, swallowing or clearing fluids from their airways,” said study coauthor and pediatrician Dr. Georgina Peacock. “These problems are sometimes experienced by children with neurologic disorders,” said Peacock, of CDC’s National Center on Birth Defects and Developmental Disabilities.

The most commonly reported complications for children with neurologic disorders in this study were influenza-associated pneumonia and acute respiratory distress syndrome (ARDS). Seventy-five percent of children with a neurologic condition who died from 2009 H1N1 influenza-related infection also had an additional high risk condition that increased their risk for influenza complications, such as a pulmonary disorder, metabolic disorder, heart disease or a chromosomal abnormality.

CDC is partnering with the American Academy of Pediatrics and influenza advocacy groups to help promote awareness about the importance of influenza prevention and treatment in these high risk children. Since the H1N1 pandemic, children with neurologic conditions continue to represent a disproportionate number of influenza-associated pediatric deaths. CDC, the American Academy of Pediatrics (AAP), Family Voices, and Families Fighting Flu recognize the need to communicate with care takers about the potential for severe outcomes in these children if they are infected with flu.

“Partnering with the American Academy of Pediatrics, influenza advocacy groups and family led-organizations CAN help prevent influenza in children at highest risk,” said CDC Director Dr. Thomas R. Frieden.

The partnering organizations are working to coordinate communication activities with their constituents, which include parents and caregivers, primary care clinicians, developmental pediatricians and neurologists in hopes to increase awareness about flu prevention and treatment in children with neurologic disorders.

“The American Academy of Pediatrics, Families Fighting Flu and Family Voices were all natural partners when we thought about how to reach as many key people as possible with this message,” Dr. Peacock adds. “The collaboration and energy around this effort has been fabulous.”

“Our network of physicians is committed to influenza prevention in all children, and especially in reducing complications in those children at higher risk for experiencing severe outcomes as a result of influenza-like illness,” says Robert W. Block, M.D., president of the AAP. “This coalition can more broadly engage the entire community of child caregivers to express how serious flu can be for these children. These efforts emphasize why the medical home is so important for children and youth with special health care needs.”

Family Voices is a national family-led organization supporting families and their children with special health care needs. Ruth Walden, a parent of a child with special needs and president of the Family Voices Board of Directors, says, “It’s frightening to think that flu can potentially lead to so many complications or even death. We’re pleased to see organizations working together to educate families and providers about the importance of prevention.”

Families Fighting Flu, an advocacy group dedicated to preventing influenza, has a long history of reaching out to families who’ve lost loved ones to flu. “Throughout the years we’ve seen firsthand how flu can affect these kids and their families’ lives. We understand that prevention is absolutely critical,” explains Laura Scott, executive director of Families Fighting Flu. “Working with other groups only expands our mission of keeping kids safe throughout the flu season.”

CDC recommends that everyone aged 6 months and older get an annual influenza vaccination, including people who are at high risk of developing serious complications. Flu vaccine is the best prevention method available. Antiviral drugs, which can treat flu illness, are a second line of defense against flu.

To learn more about influenza, visit http://www.cdc.gov/flu.

—
By Matt Carey

A Systematic Review of Vocational Interventions for Young Adults With Autism Spectrum Disorders

28 Aug

Autism is more than something which concerns children. Autistics, like everyone, grow up. Some will find jobs, some could use supports to obtain jobs. At present, most do not gain employment. How can we as a society better support autistics in gaining employment? Well, that question is largely unanswerable. A paper out yesterday in Pediatrics A Systematic Review of Vocational Interventions for Young Adults With Autism Spectrum Disorders (full text is free), shows that there is little data on vocational services for adults.

The abstract is below, and the paper online, but a quick view of the study can be found in this Reuters article, quoting lead author Julie Lounds Taylor and Paul Shattuck, an autism researcher not involved with the study:

“Even though there are vocational services out there, they haven’t been rigorously studied,” Taylor said.

She stressed, though, that the findings do not mean the programs don’t work – just that better studies are needed.

An autism researcher not involved in the new report agreed.

“I think this is more a critique of the research community, not the programs themselves,” said Paul Shattuck, an assistant professor at Washington University in St. Louis.

Why have there been so few studies, and no high-quality ones?

Both Taylor and Shattuck said that in autism, the research focus has historically been on children.

“But children with autism grow up,” Taylor pointed out. “We have startlingly little evidence on how to help adults.”

Prof. Shattuck was, in my opinion, being polite. Autism parents such as myself will have a hard time finding someone to blame for this. We have dominated the discussion and advocacy efforts for some time and we have not called for better research on such critical areas as the effectiveness of adult supports.

BACKGROUND AND OBJECTIVE: Many individuals with autism spectrum disorders (ASDs) are approaching adolescence and young adulthood; interventions to assist these individuals with vocational skills are not well understood. This study systematically reviewed evidence regarding vocational interventions for individuals with ASD between the ages of 13 and 30 years.

METHODS: The Medline, PsycINFO, and ERIC databases (1980–December 2011) and reference lists of included articles were searched. Two reviewers independently assessed each study against predetermined inclusion/exclusion criteria. Two reviewers independently extracted data regarding participant and intervention characteristics, assessment techniques, and outcomes, and assigned overall quality and strength of evidence ratings based on predetermined criteria.

RESULTS: Five studies were identified; all were of poor quality and all focused on on-the-job supports as the employment/vocational intervention. Short-term studies reported that supported employment was associated with improvements in quality of life (1 study), ASD symptoms (1 study), and cognitive functioning (1 study). Three studies reported that interventions increased rates of employment for young adults with ASD.

CONCLUSIONS: Few studies have been conducted to assess vocational interventions for adolescents and young adults with ASD. As such, there is very little evidence available for specific vocational treatment approaches as individuals transition to adulthood. All studies of vocational approaches were of poor quality, which may reflect the recent emergence of this area of research. Individual studies suggest that vocational programs may increase employment success for some; however, our ability to understand the overall benefit of supported employment programs is limited given the existing research.

—
By Matt Carey

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