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IMFAR (the International Meeting For Autism Research) starts tomorrow.

11 May

IMFAR is the world’s largest autism science conference. I don’t recall the exact statistics, but there are probably over 1000 researchers who attend. Literally hundreds of presentations on various topics. I am not attending, but I will try to write a few articles about abstracts and topics that I think of are interest.

I do know that this year Shannon Rosa (twitter: @shannonrosa) and Carol Greenburg will be attending and tweeting and probably putting some thoughts up at the Thinking Person’s Guide to Autism (twitter: @thinkingautism, Facebook and the TPGA blog.

IMFAR shows what a huge effort is going on in autism research. People are working hard to understand autism and (more importantly) make a difference in the lives of autistics.

By Matt Carey

Autistic kids are more likely to be hospitalized–and that includes for vaccine preventable diseases

15 Jul

There’s a lot of talk about comorbid conditions and autism. Sadly that conversation is often used to suggest that vaccines cause autism. As in, “look at how much GI disease there is in autism. Must be caused by vaccines!”

And because of that discussion, probably most of the people drawn to read this article will be because I highlighted vaccines in the title. So let’s get that out of the way first. A group of researchers looked at what leads to hospitalization of autistic kids. In specific, they looked at “Ambulatory care sensitive conditions” which are defined as: (ACSCs) are conditions for which appropriate outpatient care prevents or reduces the need for hospitalization. The study was presented at IMFAR and is titled Ambulatory Care Sensitive Hospitalizations Among Children with Autism Spectrum Disorder

What did they find for vaccine preventable diseases? Autistic kids are 3 times more likely to be hospitalized for vaccine preventable diseases than are kids with no chronic conditions.


Three times more often.

For diseases that can be easily prevented with vaccines.

But sadly some of the most vocal opponents to vaccines are autism parents. All due to the misinformation that claims that autism is caused by vaccines. And the result is that autistic kids suffer from preventable diseases.

Not only do these parents contribute to the misinformation campaign against vaccines, they also ignore the fact that other conditions are even more common among autistics than, say, GI disease. Not to downplay GI disease. Not at all. From this study, hospitalization from constipation occurred in 1.2% of autistic kids. That’s over 4 times higher than for kids without chronic conditions and that’s a big deal. But what fraction of autistic kids hospitalized for mental health conditions? 23.5%. That’s over 8 times more often than kids without chronic conditions. And nearly 10 times more common than hospitalization from constipation and gastroenteritis combined.

14.5% of autistic kids were hospitalized for epilepsy. Nearly 10 times the value for the general population.

But as a community, autism parents are not talking about mental health conditions and epilepsy much. The most vocal among us have let themselves focus on the (now dead) vaccine debate. And it is hurting us as a community. It is hurting the people we are supposedly working to serve: autistics.

To bring this back from a critique of the harm that vocal minority of the parents cause–

Yes, autistics are more likely to be hospitalized than are the general population. And big issues for us include mental health and epilepsy.

Hospitalization–any hospitalization–is a big deal. Especially in the autistic population. Not too long ago we saw that autistics were more likely to be restrained in the ER. I remember being left overnight in the hospital when I was a kid. No way I could do that with my autistic kid, and I don’t see being left alone as a viable option for many of the autistics (both kids and adults) I know. How do we support autistics (and other disabled people) when hospitalized? From my experiences, I can say “not well”.

And that’s something I hope we can change. I hope enough people read past the vaccine part of this article and take the time to really think about where we are applying our advocacy in the autism communities.

Here’s the table from a paper

Ambulatory Care Sensitive Hospitalizations Among Children with Autism Spectrum Disorder

P. S. Carbone1, P. Young1, G. Stoddard1, J. Wilkes1 and L. Trasande2, (1)University of Utah, Salt Lake City, UT, (2)NYU School of Medicine, New York, NY

Background: “Ambulatory care sensitive conditions” (ACSCs) are conditions for which appropriate outpatient care prevents or reduces the need for hospitalization. Children with autism spectrum disorder (ASD) may be at risk for hospitalization for ACSCs because of difficulty accessing high quality primary care.
Objectives: The purpose of this study is to describe the prevalence and health care utilization of children with ASD who are hospitalized for ACSCs and compare them with the prevalence and health care utilization for the same conditions in hospitalized children without ASD.

Methods: Using the 2009 Kids Inpatient Database, hospitalizations for an ACSC were examined within three cohorts of children aged 3-20 years: children with ASD, children with chronic conditions without ASD (CC), and children with no chronic conditions (no-CC). In order to compare the prevalence of each ACSC for the three cohorts we separately analyzed discharges with a primary diagnosis ICD-9-CM code that corresponded to each of ACSCs listed in the table. In order to compare inpatient health care utilization for the three cohorts we analyzed total charges (TC) and length of stay (LOS), for each ACSC.

Results: Within the 24,174 in the ASD cohort, we found that the proportion of hospitalizations for an ACSC was 55.9%, compared with 28.2% in the CC cohort and 22.9% in the no-CC cohort (p<0.001). The most prevalent ACSCs among children with ASD were mental health conditions (e.g. anxiety, depression, mood disorder) (23.5%) and epilepsy (14.7%). Children with ASD were more likely to be hospitalized for a mental health condition, epilepsy, constipation, dehydration, underweight and a dental condition compared with the other cohorts (Table). After adjusting for covariates (age, gender, race, median household income, primary payor, hospital variables [size, location region, teaching status, type] and point of origin of admission), we found that children with ASD were nearly ten times more likely to be hospitalized for a mental health condition (OR: 9.72; 95% CI: 8.39-11.26; p <0.001), nearly seven times more likely to be hospitalized for epilepsy (OR: 6.58; 95% CI: 5.95-7.29; p <0.001) and more likely to be hospitalized for constipation, pneumonia, dehydration, vaccine preventable diseases, underweight and nutritional deficiencies, compared with the no-CC cohort. Adjusting for the same covariates we found that children with ASD were twice as likely to be hospitalized for mental health conditions (OR: 2.19; 95% CI: 1.99-2.41; p <0.001), five times more likely to be hospitalized for epilepsy (OR: 4.99; 95% CI: 4.60-5.41; p <0.001), and were significantly more likely to be hospitalized for constipation, dehydration, and underweight compared with the CC cohort. The ASD cohort had higher TC and longer LOS for mental health conditions compared with the other two cohorts.

Conclusions: Outpatient efforts to prevent hospitalizations in children with ASD should focus on mental health care needs and seizure management. Other strategies should include actively managing constipation and dehydration, monitoring nutritional status, and immunizing against vaccine preventable conditions. Understanding the reasons for the higher healthcare utilization among children with ASD hospitalized for mental health conditions should be the subject of further research.

By Matt Carey

The largest autism science conference, IMFAR, starts this week

12 May

IMFAR, the International Meeting For Autism Research, is being held this week in Atlanta, Georgia. The schedule for the meeting is up, as is the list of talks (program). Abstracts are embargoed until Wednesday at 10am EST.

Here is a list of general topics for the conference:

Adult Outcome: Medical, Cognitive, Behavioral
Animal Models
Brain Function (fMRI, fcMRI, MRS, EEG, ERP, MEG)
Brain Structure (MRI, neuropathology)
Cognition: Attention, Learning, Memory
Communication and Language
Early Development (< 48 months)
Intellectual and Behavioral Assessment and Measurement
Invited, Keynote Speakers, Awards
Medical and Psychiatric Co-morbidity
Molecular and Cellular Biology
Repetitive Behaviors and Interests
Social Cognition and Social Behavior
Special Interest Groups (SIGs)
Specific Interventions – Non-pharmacologic
Specific Interventions – Pharmacologic
Technology Demonstration

I, for one, am very glad to see a focus on adults (<a href=”“>three sessions) and on services (three sessions).

There is a session on Autism in Africa. There is very little information on this area.

There is a dearth of autism research on the African continent; this scientific panel session aims to highlight recent research progress addressing this gap. The panel includes scientific presentations from two sub-Saharan African countries, using a combination of qualitative and quantitative methodologies and reporting on both urban and rural African populations. Altogether, the findings from these studies highlight the major barriers to appropriate support for families of children with autism in Africa (including the severe shortage of diagnostic and educational services, lack of awareness about autism and its causes, and high levels of stigma), and report on a promising scalable model that can help tackle these problems by training frontline community-based health extension workers. The challenges and opportunities discussed in these presentations apply not just to the countries under study, but have relevance for the entire African continent and low/middle income countries elsewhere. During the panel discussion these common themes will be reviewed and priority areas for future research and opportunities for intervention will be highlighted, in order to facilitate future autism research, advocacy and capacity building efforts.

I was able to attend IMFAR in San Diego a few years ago with the aid of an Autism Science Foundation grant. It was a great experience and I wish I could attend this year. There is nothing like it for concentrated autism science.

By Matt Carey

IMFAR study: No Differences in Early Immunization Rates Among Children with Typical Development and Autism Spectrum Disorders

3 May

IMFAR, the International Meeting For Autism Research, is going on this week.  In preparation for the meeting, I posted the titles of a number of studies being presented.  The full abstracts are now available.  One might venture to guess that for a segment of the online parent community, this study (sadly) may get the most attention: No Differences in Early Immunization Rates Among Children with Typical Development and Autism Spectrum Disorders

It is not one of the very large population based epidemiological studies which have many thousands of participants.  But it is a good sized study with confirmed diagnoses.

As the abstract states, the difference immunization rates is not significant, with the autistic kids rate reported as slightly lower. One child was unimmunized, and that child is autistic.

One vaccine with significantly different uptake rates is the Hepatitis B vaccine, with autistic kids receiving this at a lower rate than the typically developing kids.  The HepB vaccine is one that gets a great deal of focus by those claiming vaccines causes an autism epidemic, with claims of much higher autism risk among those vaccinated with HepB. If this were true, one would expect the autistic group to show a higher uptake of this vaccine.

All in all, as the authors note, this is not a study about causation but the results do not lend support to the idea that vaccines are associated with higher autism risk. The study was undertaken by the MIND Institute, which is generally respected by the groups who promote the idea that vaccines are associated with autism.

K. Angkustsiri1,2, D. D. Li3 and R. Hansen2,4, (1)UC Davis MIND Institute, Sacramento, CA, (2)UC Davis Medical Center, Sacramento, CA, (3)M.I.N.D. Institute and Department of Psychiatry and Behavioral Sciences, University of California Davis Medical Center, Sacramento, CA, (4)The M.I.N.D. Institute, University of California, Davis, Sacramento, CA

Background: The relationship between vaccines and autism spectrum disorders (ASD) has been of great interest to families and health providers.

Objectives: This study compares the immunization practices of preschoolers with ASD and typical development (TD).

Methods: Immunization records were abstracted from 240 (161 ASD, 79 TD) children between the ages of 24.1-54.4 months participating in the Autism Phenome Project from April 2006 to August 2011. Seventy-eight percent were male. We compared immunization rates for the vaccines required by the State of California for children ages 18 months to 5 years (3 doses of Hep B, 4 DTAP, 4 Hib, 4 PCV, 3 IPV, and 1 MMR). Of note, there was a national HIB vaccine shortage from 2007-2009. Varicella was not included due to the possibility of naturally acquired immunity. 

Results: Immunization rates in ASD children were slightly lower than in TD (see Table 1), but this difference was not statistically significant, with the exception of Hep B, where 91.3% of children with ASD had received 3 doses compared to 98.7% of TD (p=0.024). These rates were at or above those reported in the 2011 National Immunization Survey (NIS). One (0.6%) ASD child had not received any immunizations. The national rate for children who received no immunizations was 0.8%. 

Conclusions: Despite the lack of evidence supporting any causal relation of vaccines to ASD (IOM, 2011) many parents remain concerned and some choose to delay or avoid vaccines. Immunization rates in preschoolers with ASD in our sample were generally lower than TD, although there were no statistically significant differences except for Hep B.  Our study, although not designed to specifically address a causal relationship, does not support an association between vaccines and ASD. In most cases, these immunization practices represent behavior during the first 18 months of life prior to receiving an ASD diagnosis. Further study looking at differences in vaccine acceptance during the 4-6 year booster period is warranted, as having an ASD diagnosis may affect parents’ attitudes towards future immunization.

ASD (n=161) TD (n=79) p-value 2011 NIS
Hep B 147 (91.3%) 78 (98.7%) 0.024 91.1%
DTAP 150 (93.2%) 78 (98.7%) 0.110 84.6%
Hib 107 (66.5%) 48 (60.8%) 0.386 shortage 2007-09
PCV 134 (83.2%) 66 (83.5%) 0.128 84.4%
IPV 149 (92.5%) 78 (98.7%) 0.066 93.9%
MMR 151 (93.8%) 75 (94.9%) 0.99 91.6%

By Matt Carey

TPGA: IMFAR 2012: An Update on the ASD DSM-5 Recommendations

19 May

There is much discussion on the DSM 5 at IMFAR. This includes talks from Sue Swedo at the stakeholder’s lunch and a formal (and highly attended) conference talk The Thinking Person’s Guide to Autism has four of their editors at the conference and has an article on the DSM 5 discussion.

IMFAR 2012: An Update on the ASD DSM-5 Recommendations

We spoke with Sue [Swedo] at length both at the IMFAR Stakeholder’s lunch, and after her IMFAR talk. Any errors or omissions in this summary of her talk are on TPGA. -SR

More at the TPGA site.

Some first-hand reports from IMFAR

18 May

Here are some reports that have been written on IMFAR so far. IMFAR is a three day conference, with one pre-conference day. Saturday (tomorrow) is the last day.

Thinking Person’s Guide to Autism

IMFAR 2012: Genetic Variants in ASD

IMFAR 2012: On Communicating Autism Science

Autism: Friendships in Adolescence from IMFAR 2012

IMFAR 2012 Press Conference

Autism Science Foundation

Reactions from IMFAR Travel Grantees: Day 2

Reactions from IMFAR Travel Grantees: Day 1

Follow Twitter streams



Edit to add:

Here’s an article by Estee Klar:
My First Impressions of IMFAR 2012

I hope to have some articles by autistics soon.

The Implications of DSM V: Changes in Diagnostic Outcomes in An Adult Clinical Sample Re-Diagnosed According to the Proposed DSM V

17 May

The Implications of DSM V: Changes in Diagnostic Outcomes in An Adult Clinical Sample Re-Diagnosed According to the Proposed DSM V is a talk to be given at IMFAR on Saturday. Given the very high focus on the DSM V from the online autism community, I had hope that this study might shed some light on the topic. IMFAR is a forum for preliminary work, and the abstract in this case shows that:

Background: Major changes in diagnostic criteria are proposed for DSM-V, including the collapsing of autistic disorder, Asperger’s disorder and PDD-NOS into a single diagnosis; ‘autism spectrum disorder (ASD)’. The effects of these changes are as yet unclear; will individuals diagnosed by current criteria still meet diagnostic criteria with the proposed diagnostic scheme? While some work has been reported addressing this issue in children, no studies in adults have been published to date. Adults, including those first receiving a diagnosis in adulthood, are an important, and somewhat neglected, group in autism spectrum clinical services and research and are the focus for the present study.
Objectives: To review the effect of proposed DSM V diagnostic algorithms on the diagnostic outcome of a clinical sample of patients assessed for ASD in adulthood.

Methods: Diagnostic information was reviewed for 100 consecutive adult patients who attended the Behavioural Genetics Clinic, a specialist clinic providing assessment of ASD at the Maudsley Hospital, London. Original diagnosis was made in accordance with the ICD-10 criteria. Diagnostic assessment included a detailed neuropsychiatric interview, Autism Diagnostic Interview-Revised (ADI-R) and / or Autism Diagnostic Observation Schedule (ADOS) pending consent to contact parents/parental availability and physical examination. Information from the ICD 10 algorithm, ADI-R, ADOS and neuropsychiatric assessment reports was used to recode diagnostic outcomes in accordance with the proposed DSM 5 ASD algorithm as posted by the American Psychiatric Association.

Results: Data will be presented showing the degree of agreement between current ICD 10 diagnoses (Asperger’s Syndrome, Childhood Autism, Atypical Autism, Pervasive Developmental Disorder-not otherwise specified) and the proposed new DSM 5 diagnosis of ASD.

Conclusions: Implications for proposed changes to diagnostic criteria will be highlighted.

The abstract tells us little about results, just that they will be “presented showing the degree of agreement between current ICD 10 diagnoses (Asperger’s Syndrome, Childhood Autism, Atypical Autism, Pervasive Developmental Disorder-not otherwise specified) and the proposed new DSM 5 diagnosis of ASD”