Autism prevalence studies are being performed in more and more locations around the globe. It’s somewhat amazing how little is known about autism prevalence outside of Europe and the U.S.. There are data from Japan and data has been coming in from Australia and elsewhere. There is very little data from Africa. Prevalence of autistic spectrum disorders in Tripoli, Libya: the need for more research and planned services.

Data on autism are lacking for Libya. We conducted a hospital-based study in the Neurodevelopment Clinic of AI-Khadra Hospital in Tripoli to estimate the prevalence of autistic spectrum disorders in children attending the clinic. All children referred to the clinic between 2005 and 2009 with a diagnosis of speech and language disorders or behavioural difficulties were assessed. There were 38 508 children in total seen during 2005-09,180 of whom had a history of delayed speech and language and/or behavioural difficulties. Of the 180, 128 children were diagnosed with autistic spectrum disorder: 99 had classical autism, giving the prevalence of about 4 in 1000. The male:female ratio for autistic spectrum disorders was 4:1 and for autism was 4.5:1. The most common age at presentation was 2-5 years (58%) and 56% presented 6-18 months after the onset of symptoms. Physicians should consider autism in the differential diagnosis of any child presenting with a speech and language disorder and/or behavioural difficulties.

The study population is biased, being taken from children referred to a hospital. On top of that, they limit themselves to children with a history of speech and language delay and/or behavior difficulties. A lot of kids could fall through the net on this, but it is still great to see the effort being made to get information on autism prevalence in Libya.

For those who may wonder, 128 out of 38,508 is a prevalence of 0.33%, or about 1 in 300.

On the topic of autism in Africa, there is a recent paper by Richard Grinker (author of Unstrange Minds), “Communities” in Community Engagement: Lessons Learned From Autism Research in South Korea and South Africa, which I hope to review soon.

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Prof. Paull Shattuck’s group from Washington University in St. Louis has published a study in the journal Pediatrics today entitled Postsecondary education and employment among youth with an autism spectrum disorder. The full study is available free on the Pediatrics website.

Prof. Shattuck’s group presented results on autistic adults and the transition from school to adulthood previously. At IMFAR last year they presented The Role of Parental Expectations In Predicting Post-High School Outcomes for Youth with ASD and a paper in Archives of Pediatric and Adolescent Medicine discussing how autistic young adults miss out on much-needed services. Prof. Shattuck presented to the IACC in September of last year.

This sort of work is extremely important and, yet, little attention has been placed on issues surrounding autistic adults and the transition from the school programs.

The abstract is below for the present study is below.

Objectives: We examined the prevalence and correlates of postsecondary education and employment among youth with an autism spectrum disorder (ASD).

Methods: Data were from a nationally representative survey of parents, guardians and young adults with an ASD. Participation in postsecondary employment, college or vocational education and lack of participation in any of these activities were examined. Rates were compared with those of youth in three other eligibility categories – speech/language impairment, learning disability, and mental retardation. Logistic regression was used to examine correlates of each outcome.

Results: For youth with an ASD, 34.7% had attended college and 55.1% had held paid employment during the first six years after high school. Over 50% of youth who had left high school in the past two years had no participation in employment or education. Youth with an ASD had the lowest rates of participation in employment and the highest rates of no participation compared to youth in other disability categories. Higher income and higher functional ability were associated with higher adjusted odds of participation in postsecondary employment and education.

Conclusions: Youth with an ASD have poor postsecondary employment and education outcomes, especially in the first two years after high school. Those from lower income families and those with greater functional impairments are at heightened risk for poor outcomes. Further research is needed to understand how transition planning prior to high school exit can facilitate a better connection to productive postsecondary activities.

Here is the press release from Washington University in St. Louis:

Youth with autism face barriers to employment and education after high school
Rate of disconnection from work and school higher for low-income young adults

Compared with youth with other disabilities, young adults with autism spectrum disorders (ASD) face a disproportionately difficult time navigating work and educational opportunities after high school, finds a new study by Paul Shattuck, PhD, assistant professor at the Brown School at Washington University in St. Louis.

“Thirty-five percent of the youth with ASDs had no engagement with employment or education in the first six years after high school,” Shattuck says.

“Rates of involvement in all employment and education were lower for those with lower income.”

The study, published in the current issue of the journal Pediatrics, examined data from the National Longitudinal Transition Study 2 (NLTS2), a nine-year study of adolescents who were enrolled in special education at the outset. The NLTS2 included groups of adolescents with ASDs, learning disabilities, intellectual disabilities and speech and language impairments.

“Compared with youth in the three other disability categories, those with an ASD had significantly lower rates of employment and the highest overall rates of no participation in any work or education whatsoever,” Shattuck says.

“Those with an ASD had a greater than 50-percent chance of being unemployed and disengaged from higher education for the first two years after high school.”

Shattuck notes that approximately 50,000 youth with ASDs will turn 18 this year in the United States.

“Many families with children with autism describe turning 18 as falling off a cliff because of the lack of services for adults with ASDs,” he says.

“The years immediately after high school are key. They are the time when people create an important foundation for the rest of their lives.

“There needs to be further research into services for young adults with ASDs to help them make the transition into adulthood and employment or further education.”

Shattuck says that particular attention should be paid to interventions that will help poorer youth overcome barriers to accessing services and achieving fuller participation in society.

This study was funded by the Organization for Autism Research, Autism Speaks and the National Institute of Mental health.

Shattuck’s study co-authors are Sarah Carter Narendorf, Benjamin Cooper and Paul Sterzing of the Brown School; Mary Wagner, PhD, of SRI International; and Julie Lounds Taylor, PhD, of Vanderbilt University.

Shattuck will give a keynote presentation on his research at the International Meeting for Autism Research in Toronto on May 16, 2012.

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Sometimes you just gotta laugh. And cry. For a Mother’s day picture roundup, the Baltimore Sun included Jenny McCarthy. She’s a mom, sure. But check out the caption.

Actress Jenny McCarthy is a vocal advocate for parents making informed healthcare decisions and has written a best-selling book about her struggle to heal her son’s autism. Pictured: McCarthy, host of the new reality series “Love in the Wild,” takes part in a panel discussion at the NBCUniversal Summer Press Day 2012 introducing new television shows for the summer season in Pasadena, California on April 18, 2012

Jenny McCarthy, informed healthcare advocate.

I guess she’s been quiet for long enough that the media has forgotten her “advocacy”. From shouting “bullshit” at the head of the AAP to the “Green Our Vaccines” rally to, in general, spreading poor information about autism and vaccines, Jenny McCarthy is not on my list of health care advocates.

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A pubmed abstract out this week Deficit, Difference, or Both? Autism and Neurodiversity brings the fourth entry in pubmed using the term “neurodiversity”. One other paper is in Portuguese, and another is from Sweden. That said, I am looking forward to reading this study. I say looking forward because when I checked the the full paper was not available yet. I know of the first author, though. Steven Kapp is an autistic researcher at UCLA. He is a member of the Autistic Self Advocacy Network (ASAN) and was on my list of people to speak with at IMFAR last year.

Here is the abstract.

The neurodiversity movement challenges the medical model’s interest in causation and cure, celebrating autism as an inseparable aspect of identity. Using an online survey, we examined the perceived opposition between the medical model and the neurodiversity movement by assessing conceptions of autism and neurodiversity among people with different relations to autism. Participants (N = 657) included autistic people, relatives and friends of autistic people, and people with no specified relation to autism. Self-identification as autistic and neurodiversity awareness were associated with viewing autism as a positive identity that needs no cure, suggesting core differences between the medical model and the neurodiversity movement. Nevertheless, results suggested substantial overlap between these approaches to autism. Recognition of the negative aspects of autism and endorsement of parenting practices that celebrate and ameliorate but do not eliminate autism did not differ based on relation to autism or awareness of neurodiversity. These findings suggest a deficit-as-difference conception of autism wherein neurological conditions may represent equally valid pathways within human diversity. Potential areas of common ground in research and practice regarding autism are discussed.

The Simons Foundation lists this paper as one of the “papers of the week“.

You can read more about the lead author, Steven Kapp, in the UCLA paper. The Daily Bruin article is Autistic student overcomes symptoms to help treat others. The story tells a little of his childhood and how he is now a graduate student researcher. And his plans for the future:

Eleven years later, Kapp is back at UCLA as a doctoral student in psychological studies in education. His goal is to become a professor and research ways to improve the quality of life and adaptive skills of people with autism.

The paper is based on an online survey and those are prone to biases. However, the paper does appear to address some important issues on the differences and the overlap between the medical model and neurodiversity approaches to autism. Further it doesn’t fall into the false-dichotomy trap of many neurodiversity discussions of seeing autism as deficit or difference. And, as we can see from the Daily Bruin article, Mr. Kapp is interested in researching ways to improve the quality of life for autistics.

I have hope that this is an article which can help to educate researchers (and others) about neurodiversity without the straw-men and misconceptions that are used by opponents. But, beyond that, the paper starts the dialogue in the literature of how to incorporate neurodiversity ideas into research and practice. Depending on how presented, this could be a very valuable paper.

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Remember how some comments in a scientific talk about the DSM 5 in Iceland was picked up by the New York Times, leading to a media and advocate firestorm of activity? The Times article was New Definition of Autism Will Exclude Many, Study Suggests.

Medpagetoday.com has another chapter in this story: Autism Criteria Critics Blasted by DSM-5 Leader. The term “blasted” doesn’t strike this reader as helping to bring some order to the discussion. The new article reports on a talk by Sue Swedo, who is a member of the DSM 5 committee. The New York Times article was focused on a talk by Fred Volkmar, who was a member of the DSM 5 committee but has since left.

PHILADELPHIA —The head of the American Psychiatric Association committee rewriting the diagnostic criteria for autism spectrum disorders took on the panel’s critics here, accusing them of bad science.

Susan Swedo, MD, of the National Institute of Mental Health, said a review released earlier this year by Yale University researchers was seriously flawed. That review triggered a wave of headlines indicating that large numbers of autism spectrum patients could lose their diagnoses and hence access to services.

Prof. Volkmar’s group analyzed data from 1993, when the DSM-IV was in development, and presents results claiming that a large fraction of autistics would not be identified under the DSM 5. Sue Swedo is quoted as responding in her talk:

Swedo said the Yale group misused the 1993 field trial data because it was inappropriate to take clinical evaluations structured a certain way to evaluate the DSM-IV criteria against DSM-III, and use them to determine how the DSM-5 criteria would perform.

“It was not just comparing apples and oranges, it was comparing apples with Apple computers,” she argued. “We [in DSM-5] were using words that hadn’t really been used in DSM-IV.”

In my opinion the main goal of the DSM 5 should be accuracy. Sue Swedo says that the field trials indicate that it is accurate, and suggests that the prevalence will not be dramatically changed with these criteria:

She pointed to the new field trial data from DSM-5 as justifying the work group’s decisions. The criteria showed excellent reliability—that is, different clinicians evaluating the same child usually came to the same diagnoses, with intraclass kappa values of 0.66 and 0.72 at the two academic centers where the criteria were tested.

Moreover, when the clinicians applied DSM-IV and DSM-5 criteria to the nearly 300 children included in the trial, the autism spectrum prevalence was not changed much.

I’m sure this isn’t the end of the discussion. One can hope that the discussion can be more data and fact driven than it has been in the recent past.

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In the U.S. (and I assume elsewhere) budget cuts are pending on state and federal levels. The Arc is warning of potential cuts which can make a major impact on funding for the intellectually disabled and the developmentally disabled.

The full action alert can be found on the ARC website.

Don’t Cut Our Lifeline Medicaid Toolkit

Protect the Services You or a Loved One Rely On to Survive! Take Action Now!

After much debate, Congressional leaders and President Obama reached a deficit reduction and debt deal in time to avoid defaulting on the Nation’s debt. Your work to convince legislators to protect Medicaid in the short term made a difference! Now, we must redouble our efforts as more grave threats lie ahead.

We need you to continue contacting your elected officials and tell them, “Don’t Cut Our Lifeline!” Participate in their town hall meetings; visit their local offices; and invite them to meet families or to see your programs. Advocates like you sharing their stories have already made a great impact, we can’t afford to lose steam now.

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One of the themes that has grown in the past couple of years that Andrew Wakefield never said MMR causes autism. Rather, the story goes, he was a cautious researcher who merely reported what parents told him and called for more research to be done.

Here is an example by Mr. Dan Olmsted of the Age of Autism blog:

That Early Report – which appeared in 1998 in the Lancet, Britain’s other leading medical journal – noted that in eight of the 12 children (including Thomas’s), parents linked the onset of symptoms to the MMR shot, and it called for more research to see if a link in fact existed. It said no link to the MMR was established by the simple case series report.

Despite that cautious approach, the report and its aftermath sparked a firestorm that, fueled by Deer, ultimately led to Wakefield losing his medical license and to the Lancet retracting the report. Yet thousands of parents continue to support Wakefield and describe the same sequence of shot and symptoms as parents in the original case series. Mainstream media, medical groups, public health officials and pharmaceutical companies say any link has been discredited.

For those who have actually followed the Wakefield/MMR story, the idea that Mr. Wakefield’s approach could be described as “cautious” is difficult to swallow. The idea that the “firestorm” was fueled by Mr. Deer is an odd assertion at the best. Mr. Wakefield’s now-retracted Lancet paper was published coincident with an anything-but-cautious press conference in February 1998. Mr. Deer started reporting in the story in February of 2004. But this is off topic. Mr. Wakefield is repeatedly cited as merely calling “for more research to see if a link existed”.

Mr. Olmsted is not the only one to use the “only called for more research” theme. Dr. Bob Sears, for example, stated:

1. Dr. Wakefield’s study never claimed there was a link between the MMR and autism – it only suggested a possible correlation between the MMR vaccine triggering intestinal inflammation which seems to occur in some children with autism. He basically called for MORE research to be done on this.

To be fair, the “only called for more research” theme goes back quite a way. Here is a news story from 2003.

The problem for Mr. Wakefield’s supporters is that Mr. Wakefield did not limit his discussion to the Lancet. As already noted, he held a press conference to announce his results and has made many more statements over the years. More to the point, Mr. Wakefield did say that the MMR causes autism.

Here is a collection of Mr. Wakefield’s statements which range from suggesting a possibility that the MMR causes autism to outright claiming that he “has shown” that the use of the MMR vaccine causes autism.

Mr. Wakefield’s patent application states clearly and unequivocally that the MMR vaccines has “been shown” to cause “pervasive developmental disorder”:

“It has now also been shown that use of the MMR vaccine (which is taken to include live attentuated measles vaccine virus, measles virus, mumps vaccine virus and rubella vaccine virus, and wild strains of the aforementioned viruses) results in ileal lymphoid nodular hyperplasia, chronic colitis and pervasive developmental disorder including autism (RBD), in some infants.”

And also

I have also found that regressive behavioral disorder (RBD) in children is associated with measles, mumps and rubella vaccination.

More examples include:

In the 1998 Lancet paper (now retracted), the MMR is referred to as one of the “the apparent precipitating events”

In sworn testimony in a congressional hearing Mr. Wakefield states that an “environmental insult” (previously discussed at length as vaccination) “in many children, clearly, the subset of autistics, it leads to gut infection and damage…”

So finally, in summary, we have an environmental insult in perhaps a genetically susceptible child. The problem is that if you go to Sweden now, autism affects over 1.2 percent of the pediatric population. So if there is a genetic background, it is clearly widely distributed within the population. We believe that in many children, clearly, the subset of autistics, it leads to gut infection and damage; that leads to an ingress, an impaired metabolism, degradation of these chemicals from the gut which then get through and impact upon the brain.

In the video for the press conference for his (now retracted) 1998 Lancet paper, Mr. Wakefield stated that the single (monovalent) vaccines are “safer than the polyvalent”. How can they be safer if there isn’t a proven link to autism?

My opinion, again, is that the monovalent, the single vaccines, measles, mumps and rubella, are likely in this context to be safer than the polyvalent vaccine.

and his feeling is that “the risk of this particular syndrome developing is related to the combined vaccine…”:

Again, this was very contentious and you would not get consensus from all members of the group on this, but that is my feeling, that the, the risk of this particular syndrome developing is related to the combined vaccine, the MMR, rather than the single vaccines.

From the Power of One Idea” rally, Washington DC, April 21, 2002. Mr. Wakefield informs the public that public health officials have failed and “Among the reasons for this failure is the fact that they are faced with the prospect that they themselves may be responsible for the epidemic”:

We are in the midst of an international epidemic. Those responsible for investigating and dealing with this epidemic have failed. Among the reasons for this failure is the fact that they are faced with the prospect that they themselves may be responsible for the epidemic.

Therefore, in their efforts to exonerate themselves they are an impediment to progress. I believe that public health officials know there is a problem; they are, however, willing to deny the problem and accept the loss of an unknown number of children on the basis that the success of public health policy – mandatory vaccination – by necessity involves sacrifice.

Neither I, nor my colleagues subscribe to the belief that any child is expendable. History has encountered and dealt with such beliefs.

You, the parent’s and children, are the source of the inspiration and strength for our endeavours; our quest for truth through science – a science that is compassionate, uncompromising and uncompromised.

I do not mean to stir you to mutiny, but be assured that armed with this science it is in your power to force this issue, in your pediatricians office, in Congress, in the Law Courts.

Keep faith with your instincts. They have served you well.

From a news story (Shame on officials who say MMR is safe) in 2001, Mr. Wakefield is quoted discussing how there are “long-term adverse reactions that I believe we are now seeing”.

Our new paper is not anti-vaccine. It is about the safest way in which to deliver these vaccines to children in order to protect them against acute infectious disease and against the long-term adverse reactions that I believe we are now seeing

From a BBC news program in 2002. The regression following MMR is referred to as “not a coincidence”:

WAKEFIELD: .. these children received not one dose but three doses of the MMR vaccine, and what we see in many of these children is a double hit phenomenon. They regress after the first dose and then they regress further after the second dose. This child did not receive his first MMR vaccine until he was 4 years 3 months of age. He then deteriorated into autism, a disintegrative disorder. He then received his second dose at 9 years of age and disintegrated catastrophically. He became incontinent of faeces and urine and he lost all his residual skills. This is not coincidence.

This is not to be considered an exhaustive list. I won’t be surprised if more quotes from Mr. Wakefield are in the media. But these should suffice: Mr. Wakefield has, repeatedly, stated that MMR causes autism.

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Paul Shattuck is one of those people I greatly admire. He and his group ask important questions in areas which are generally given low levels of attention. Regular readers to Left Brain/Right Brain will (I hope) recognize that improving the research base for knowledge about autistic adults is a high priority of mine. I can’t say as I was exactly pleased to see the abstract below, as it points out the lack of knowledge that we have. But I was pleased to see this topic highlighted. The study (which I have not seen in full yet) is Services for adults with an autism spectrum disorder.

The need for useful evidence about services is increasing as larger numbers of children identified with an autism spectrum disorder (ASD) age toward adulthood. The objective of this review was to characterize the topical and methodological aspects of research on services for supporting success in work, education, and social participation among adults with an ASD and to propose recommendations for moving this area of research forward. We reviewed the literature published in English from 2000 to 2010 and found that the evidence base about services for adults with an ASD is underdeveloped and can be considered a field of inquiry that is relatively unformed. Extant research does not reflect the demographic or impairment heterogeneity of the population, the range of services that adults with autism require to function with purposeful lives in the community, and the need for coordination across service systems and sectors. Future studies must examine issues related to cost and efficiency, given the broader sociopolitical and economic context of service provision. Further, future research needs to consider how demographic and impairment heterogeneity have implications for building an evidence base that will have greater external validity.

It is amazing that after a decade of intense focus on autism research, we know so little. I greatly appreciate Prof. Shattuck’s team taking the time to review the literature. It’s time to put some major effort into filling in these knowledge gaps.

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From the Minnesota Daily: U to research rate of autism in Somali community.

Parents and others in Minnesota’s Somali community are concerned about the prevalence of autism in children. Now, for the first time, state funds will go to researching autism in that community.

The health and human services omnibus bill Gov. Mark Dayton signed Friday allocates $200,000 to the Minnesota Department of Health to work with the University of Minnesota on the research.

The Somali community in Minnesota has been discussed a great deal online due to the apparently high prevalence rates there.

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In many autism prevalence studies, higher socio-economic status (SES) for the parents is correlated with higher autism rates in the children of those families. While a conclusive reason for this has not been shown, it has been conjectured that the SES variability could be due to social influences such as access to care.

A recent study from Sweden shows the opposite. In this study, lower income families and children of parents with manual occupations show higher autism prevalence:

OBJECTIVE:
Epidemiological studies in the United States consistently find autism spectrum disorders (ASD) to be overrepresented in high socioeconomic status (SES) families. These findings starkly contrast with SES gradients of many health conditions, and may result from SES inequalities in access to services. We hypothesized that prenatal measures of low, not high, parental SES would be associated with an increased risk of offspring ASD, once biases in case ascertainment are minimized.

METHOD:
We tested this hypothesis in a population-based study in Sweden, a country that has free universal healthcare, routine screening for developmental problems, and thorough protocols for diagnoses of ASD. In a case-control study nested in a total population cohort of children aged 0 to 17 years living in Stockholm County between 2001 and 2007 (N = 589,114), we matched ASD cases (n = 4,709) by age and sex to 10 randomly selected controls. We retrieved parental SES measures collected at time of birth by record linkage.

RESULTS:
Children of families with lower income, and of parents with manual occupations (OR = 1.4, 95% CI = 1.3-1.6) were at higher risk of ASD. No important relationships with parental education were observed. These associations were present after accounting for parental ages, migration status, parity, psychiatric service use, maternal smoking during pregnancy, and birth characteristics; and regardless of comorbid intellectual disability.

CONCLUSIONS:
Lower, not higher, socioeconomic status was associated with an increased risk of ASD. Studies finding the opposite may be underestimating the burden of ASD in lower SES groups.

I haven’t been able to view the full study yet, so I am not sure what influences the authors may be implicated. What they do suggest is that the autism prevalence in lower SES groups may be underestimated in many prevalence estimates. I don’t think this will come as a surprise to many who consider the lower prevalence in the lower SES groups to be an indication of social factors at play.

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