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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”

IMFAR 2012 begins

17 May

The International Meeting for Autism Research (IMFAR) started on Wednesday with a press conference and a pre-conference program focused on stakeholders. I was fortunate to be able to attend last year, but not this year. I did call in to the press conference, though and it brought back some of the excitement for me.

Before going on, note that the press conference is covered at the Thinking Person’s Guide to Autism (by people who actually attended!) as IMFAR 2012 Press Conference

The press conference highlights a number of studies which are about to be presented at the conference. It was stressed that IMFAR is a conference where the abstracts are reviewed before being approved, but the studies are not peer-reviewed as in a journal. It is a conference for very new results.

One study highlighted was Beyond ASD: Developmental Outcomes of High Risk Siblings. This is a follow on study to the well publicized baby siblings study that found about 19% recurrence risk for baby siblings of autistic children. This is the study that looks at the other 81%, the kids who did not get an autism diagnosis. Short answer–even among the children who did not get an autism diagnosis, the baby siblings had more autistic traits than children who were not baby siblings of autistics.

Here’s the conclusion from the abstract:

Conclusions: At three years, HR [high Risk]children without an ASD had higher levels of ADOS symptom severity, and lower levels of developmental functioning than LR [Low Risk]children. They were more likely to occupy clusters characterized by lower levels of developmental functioning, and less likely to occupy a cluster characterized by higher levels of developmental functioning and low levels of symptom severity. Descriptively, two-thirds of HR children occupied Clusters 1 and 2, characterized by normative outcomes, whereas one third occupied Clusters 3, 4, and 5, characterized by elevated ADOS severity, lower developmental quotients, or both. These results suggest an early ‘broader autism phenotype’ in HR siblings characterized by ASD symptoms sub-threshold for diagnosis and/or developmental delays.

and the summary:

A new study presented at the International Meeting for Autism Research examined the development of the younger siblings of children with an Autism Spectrum Disorder (ASD). ASDs are developmental conditions characterized by problems with interaction, communication and repetitive behaviors. Previously, an international consortium of researchers found that almost one in five of the younger siblings of children with an ASD themselves developed an ASD. The researchers’ new findings suggest that of the younger siblings who did not develop an ASD, one in three faces challenges at three years of age.

The challenges faced by these younger siblings of children with ASD include slight delays in verbal and nonverbal functioning and somewhat elevated levels of autism-related characteristics. Examples of a child’s autism-related characteristics—which are not as severe as those of children with an ASD—include lower levels of back-and-forth play with others, and lower levels of pointing to express interest in what is going on around them. Overall, the researchers say, the majority of high-risk siblings are developing typically at three years of age, but a minority face challenges that appear to reflect subtler forms of ASD-related problems. Follow-up of these children through school age is necessary to understand their long-term outcomes.

The second study highlighted was Shared Decision Making (SDM) and the Treatment of Autism Spectrum Disorders (ASDs). My guess is that the themes presented in the summary below will not come as a great surprise to those who have read parent narratives on the internet. I.e. that parents look to pediatricians for treatment options for their autistic kids, but the doctors often don’t see autism treatment to be something they can do.

The goal of this qualitative study was to describe factors influencing shared decision making for treatment decisions by pediatricians and parents of children with autism spectrum disorders (ASD). We conducted in-depth interviews of 20 pediatricians and 20 parents of children with ASD 2-5 years of age. The analysis of the interview transcripts revealed that many pediatricians did not view treatment for autism spectrum disorders to be within their scope of practice or competence. Parents did not view their pediatrician as knowledgeable or invested in making treatment recommendations. We also found that parents often independently pursue treatments, not benefiting from professional guidance regarding safety and effectiveness. Results from this study indicate substantial barriers to shared decision making between pediatricians and families in the care of autism. Research is needed in order to understand how best to help 1) parents have realistic expectations of their pediatrician and 2) improve training of pediatricians to be effective partners in care of children with ASDs and their families

The third highlighted study was Oxytocin’s Impact on Social Cognitive Brain Function in Youth with ASD. The study member who presented this for the study called it “very exciting and very preliminary”. Two features of this study stand out immediately: (1) it is a double-blind, crossover, randomized control study and (2) it includes fMRI (functional magnetic resonance imaging).

Here is the summary:

We are presenting the preliminary data from the first ever double blind, placebo controlled study of changes in brain activity in children with an ASD (ages 7-18) after a single dose of oxytocin. The initial results indicate that oxytocin, administered via nasal spray prior to the scan, increased activity in brain regions known to process social information. Oxytocin is a naturally occurring substance that is produced in the brain and plays a role in regulating social abilities.

These results provide the first, critical steps towards devising more effective treatments for the core social deficits in autism which may involve a combination of validated clinical interventions with an administration of oxytocin. Such a treatment approach will fundamentally alter for the better our understanding of autism and its treatment.

There were two more studies highlighted at the press conference but, I’m sorry to say, I was not able to listen to those presentations.

Measuring Interactive Developmental Pathways in ASD: A Dual-Domain Latent Growth Curve Model Symptoms, Diagnosis & Phenotype – Cognition & Behavior: Early ASD

As children with autism spectrum disorders (ASD) grow up, they embark on quite different developmental pathways. Some individuals learn to live independently, maintain friendships, and find work, many require some support in their daily lives, and still others experience many challenges. Understanding how very young children with ASD develop important early skills can provide vital clues that might help predict these various pathways. For example, researchers have suggested that greater social interest and awareness in children with ASD may have a positive impact on language, which in turn may have a positive influence on other aspects of learning and development. This model of “cascading” effects is intuitively appealing but has not been validated in ASD. The Canadian “Pathways in ASD” Study (funded by CIHR and other provincial governments and foundations) is uniquely able to shed light on this issue as it is the largest prospective follow-up study of very young children with this disorder. As part of this study, we used information about 365 2-to-4-year-olds with ASD to examine whether such cascades occurred across early social competence and language abilities in the year after diagnosis. On average, the children made significant progress in social competence and remarkable gains in language abilities over that year. Within this one-year period, greater change in social competence in the first year was associated with more growth in language skills. However the reverse wasn’t true: early language ability had a much smaller effect on changes in children’s social competence. These findings therefore support the idea of early developmental cascade effects. Early advantages and gains in social competence may lead to advantages in other domains. However, children whose very early social skills lag farther behind at time of diagnosis are also less likely to show language progress. This study highlights the importance of early interventions that focus on emerging social competence (versus only language skills), as these are likely to “spill over” across other developmental pathways.

and

Head Lag in Infants At Risk for Autism

This new prospective study of six-month-old infants at high genetic risk for autism identified weak head and neck control as a red flag for autism spectrum disorder (ASD) and language and/or social developmental delays. Researchers at the Kennedy Krieger Institute concluded that a simple “pull-to-sit” task could be added to existing developmental screenings at pediatric well visits to improve early detection of developmental delays.

While previous studies have shown that head lag indicates developmental delays in children with cerebral palsy and preterm infants, postural control in infants at risk for ASD had not been examined. In this research, Dr. Landa and her team assessed infants in a “pull-to-sit” task, a simple measure of postural control in infants. The findings suggest that motor delays may have an important impact on child development.

Four of the editors from The Thinking Person’s Guide to Autism are at IMFAR this year. Their post on the press conference is already up: IMFAR 2012 Press Conference

Prevalence of autistic spectrum disorders in Tripoli, Libya: the need for more research and planned services.

15 May

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.

Postsecondary education and employment among youth with an autism spectrum disorder

14 May

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.”

https://www.youtube.com/v/Qyl2ZQRb4ds?version=3&feature=player_embedded

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.

Baltimore Sun drops the ball on Jenny McCarthy fluff

12 May

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.

Deficit, Difference, or Both? Autism and Neurodiversity

11 May

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.

Autism Criteria Critics Blasted by DSM-5 Leader

10 May

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.

Arc action alert: Don’t Cut Our Lifeline Medicaid Toolkit

9 May

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.

Andrew Wakefield’s many statements that MMR causes autism

8 May

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.

Services for adults with an autism spectrum disorder

7 May

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.