Telescoping of caregiver report on the Autism Diagnostic Interview – Revised.

29 Mar

One issue that comes up a lot is the reliability of parents’ memories about the development of their children. This can be especially hard the more time that passes and we look back, potentially “telescoping” events. In a recent study, researchers from the University of Michigan, including Catherine Lord, look at telescoping of reports. What they found what that as time went on, parent reports language delays changed. As time went on, parents reported language delays where delays weren’t reported when the children were younger. Interestingly to me, age of “symptom onset” increased with time. I find this interesting because I have read a few discussions online where as time has gone on, parents have reported “symptom onset” occurred at earlier ages. Reports of age of first concerns of delays, daytime bladder control and independent walking did not vary with time.

Here is the abstract.

Telescoping of caregiver report on the Autism Diagnostic Interview – Revised.

Abstract

Background: Delays in development are a fundamental feature in diagnosing autism spectrum disorders (ASD). Age of language acquisition, usually obtained through retrospective caregiver report, is currently used to distinguish between categories within ASD. Research has shown that caregivers often report children as having acquired developmental milestones earlier or later than they were actually achieved. The current study examines the extent to which this phenomenon, referred to as ‘telescoping,’ impacts retrospective reports provided by caregivers of children with ASD.

Methods: Participants were 127 caregivers of children referred for possible ASD or non-spectrum developmental delay. Caregivers were interviewed when children were 2, 3, 5, and 9 years of age. Caregiver-reported ages of first concern, language and non-diagnostic developmental milestones and interviewer-estimated age of onset were compared over time using linear models.

Results: Significant telescoping of language milestones resulted in more children meeting language delay criteria as they grew older, in spite of original reports that their language was not delayed. There was little evidence of consistent telescoping of caregiver-reported ages of first concern, daytime bladder control, and independent walking. With time, the interviewers’ judged ages of symptom onset increased, but remained prior to age three.

Conclusions: Telescoping of caregiver-reported ages of language acquisition has implications for both clinical diagnosis and genetic studies using these milestones to increase homogeneity of samples. Results support proposals to remove specific age-based criteria in the diagnosis of ASD. Telescoping should be considered when working with any clinical population in which retrospectively recalled events are used in diagnosis.

Yes, we’d like to think we are all excellent at recalling details about our kid’s development. But sometimes memory is not the best gauge. Sometimes data is best.

Interagency Autism Coordinating Committee (IACC) Services Subcommittee: meeting about to start

29 Mar

The Interagency Autism Coordinating Committee (IACC) Services Subcommittee is about to hold a meeting. You can listen in via phone or by webcast. Instructions are below.

Interagency Autism Coordinating Committee (IACC) Services Subcommittee

Please join us for an in-person meeting of the IACC Services Subcommittee that will take place on Tuesday, March 29, 2011 from 2:00 p.m. to 4:30 p.m. ET.

Agenda: The subcommittee plans to discuss issues related to services and supports for individuals with autism spectrum disorder (ASD) and their families.

Meeting location:
The Neuroscience Center (NSC)
6001 Executive Boulevard, Room 8120
Rockville, MD 20852

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

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

Conference Call Access
USA/Canada Phone Number: 888-456-0356
Access code: 1427016

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

Webinar Access: https://www2.gotomeeting.com/register/169578426

If you experience any technical problems with the web presentation tool, please contact GoToWebinar at (800) 263-6317.

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

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

Sweden to check birth blood samples of autistic Somalis

29 Mar

Swedish researchers explore Somali-autism link discusses a study to use blood samples from samples taken at birth:

The researchers at the Autism centre for small children in Stockholm want to see if the samples contained in the so-called PKU register, which is used on newborns to detect a slew of illnesses, can explain the differences in levels of autism between children of Somali and children of Swedish origin.

“We want to look at the vitamin D levels at a very early stage in children who are later diagnosed with autism,” Elisabeth Fernell at the Autism centre for small children told the Dagens Nyheter (DN) daily.

The story linked to above has some weaknesses, but it is interesting that the study is being undertaken. People are looking at the question. This group in Sweden. The CDC together with Autism Speaks in the US. The Minnesota Department of Public Health.

No association between early gastrointestinal problems and autistic-like traits in the general population

28 Mar

Gastrointesintal problems are a common topic of discussion and debate in the online autism communities. Much of the discussion involves causation: do GI problems cause autism? A recent study looks at a tangent of this argument. Considering the general population, do GI problems early in life predict autistic traits later in life? The methodology isn’t the strongest: they use parent reports of GI complaints and the self-report questionaire Autism Quotient. They also asked about whether the individuals were immunized with the MMR vaccine.

The results:

There was no statistically significant difference in AQ scores between those who had (n=133) and those who had not (n=671) experienced early gastrointestinal symptoms. (2) analyses revealed that the children with early gastrointestinal problems were no more likely to be represented in the upper quintile of scores on any of the AQ scales. The measles, mumps, and rubella vaccination was unrelated to gastrointestinal symptoms or AQ scores.

The abstract is quoted below:

No association between early gastrointestinal problems and autistic-like traits in the general population

Aim
The aim of this study was to determine whether gastrointestinal problems in early childhood relate to autistic-like traits in a general population sample.

Method
The parents of 804 children (442 females; 362 males) reported at 1-, 2-, 3-, and 5-year follow-ups whether their child had been taken to a hospital, general practitioner, or health clinic for any of five gastrointestinal symptoms: (1) constipation; (2) diarrhoea; (3) abdominal bloating, discomfort, or irritability; (4) gastro-oesophageal reflux or vomiting; and (5) feeding issues or food selectivity. Parents also reported whether their child had received the measles, mumps, and rubella vaccination. Autistic-like traits were measured when the children had reached early adulthood (mean age 19y 7mo; SD 0.63y) using a self-report questionnaire, the Autism Spectrum Quotient (AQ).

Results

There was no statistically significant difference in AQ scores between those who had (n=133) and those who had not (n=671) experienced early gastrointestinal symptoms. (2) analyses revealed that the children with early gastrointestinal problems were no more likely to be represented in the upper quintile of scores on any of the AQ scales. The measles, mumps, and rubella vaccination was unrelated to gastrointestinal symptoms or AQ scores.

Interpretation

Parent-reported gastrointestinal problems in early childhood are unrelated to self-reported autistic-like traits in the general population.

Somali community start to fight back against Andrew Wakefield and Generation Rescue

26 Mar

Taken from http://www.startribune.com/lifestyle/health/118686794.html

Hodan Hassan of Minneapolis understands why some parents are afraid to have their children vaccinated. Until recently, she was one of them.

But today, Hassan will be one of the featured speakers at a Somali community forum designed to allay fears about vaccines in the midst of a measles outbreak.

“[I] read about how the world used to be without the immunization program,” said Hassan, who has four children, including a daughter with autism. “This generation doesn’t understand the benefit, and the importance, and how lucky they are having an immunization program in place.”

So far, 11 cases of measles have been confirmed in Hennepin County since February, five in Somali children who had not been vaccinated. Experts say that vaccine rates have dropped in the Somali community, along with other groups, because of unfounded fears of a possible link to autism.

Now, Somali physicians and state health officials have joined forces to counter what they say are widespread misconceptions about vaccine safety, which has left many children vulnerable to preventable diseases. The concern has grown in the last two years, since a Health Department study confirmed that there were an unusually high number of Somali children in the Minneapolis schools’ autism program.

In Hassan’s case, she stopped vaccinating her children after she learned that her daughter, Geni, now 6, had autism. At the time, she said, she was desperate for answers. Medical experts could not explain what caused her daughter’s condition, a severe communication and behavior disorder. But she quickly learned about the autism activists who blame the vaccines, in spite of medical assurances to the contrary. She began reading their books and attending their conferences, she said, and the fear took hold.

In December, she said, she turned out to hear Andrew Wakefield, the hero of the anti-vaccine movement, at a Somali community meeting in Minneapolis. Wakefield conducted a now-discredited 1998 study suggesting a link between autism and the measles, mumps and rubella (MMR) vaccine.

‘I was shocked’

Later, Hassan said, a local doctor challenged her to do her own research on Wakefield, who was accused of scientific misconduct in connection with the study, and ultimately stripped of his medical license in England.

Now she is one of his biggest critics. “I was shocked when I found out people used to die [of measles],” she said. Many still do in her native Somalia, she noted, and in other in parts of the world where vaccines are not available.

“If we could all go back in time, we would have appreciated it,” she said.

Just this week, Wakefield returned to Minneapolis for a private meeting with Somali families. Members of the news media were barred from Wednesday’s gathering, which reportedly drew only about a half-dozen Somali parents.

But one of the organizers, Patti Carroll of Shoreview, said she doesn’t believe parents are worried about the measles outbreak.

“They’d rather have them get the measles than deal with the effects of unsafe vaccines,” said Carroll, a volunteer with Generation Rescue, an autism advocacy group.

Health officials warn that measles is highly contagious and extremely dangerous. So far, six people have been hospitalized in the current outbreak, most of them young children. All are said to be recovering.

This week, Hassan circulated an e-mail inviting members of the Somali community to tonight’s forum at the Brian Coyle Center in Minneapolis.

“Our community has been misled about MMR causing autism,” she wrote. “Vaccines don’t cause autism and the benefit [outweighs] the risk.” She added: “We are very much against an unlicensed doctor to make our community his scapegoat.”

Measles in Minnesota: more cases and a visitor

26 Mar

We recently discussed here on LeftBRainRightBrain the measles outbreak in Minneapolis. Since then the number hospitalized has continued to rise. There are now six kids who have been hospitalized. As of March 23rd (two days ago) there were 11 cases of measles total. Why bring this up on an autism-focus blog? Because the outbreak has ties to the autism communities. One of the questions that has arisen in recent years is whether there are more autistic children amongst the Somalis in Minneapolis than amongst other groups. In response to the news that a larger fraction of young Somaili children were in the autism classes, Generation Rescue reached out to the Somali community. Andrew Wakefield reached out to the Somali community. Fear of autism appears to be behind a possible low vaccination rate amongst Somali children. And, now, Somali children have higher incidence of measles in this outbreak.

According to the MDH: “Four of the cases were too young to receive vaccine, five were of age but were not vaccinated, and two have unknown vaccine status”. Of those unvaccinated, I believe at least three were from the Somali community.

In response to the measles outbreak, Andrew Wakefield is once again speaking with the Somali community there. In Anti-vaccine doctor meets with Somalis, the Minneapolis Star Tribune reports:

Dr. Andrew Wakefield, a controversial British doctor whose research purported to link vaccines to autism, met privately with a gathering of Somali parents in Minneapolis on Wednesday night.

and,

Wakefield, who arrived amid the city’s first measles outbreak in years, declined to answer questions about the purpose of his visit. Reporters were barred from the meeting, which was described as a “support group” for parents of autistic children.

I find this closed door discussion more than a bit ironic. Calls for transparency abound when people are inquiring about the government’s actions. But Mr. Wakefield declined to even comment for the press, much less allow access to his meeting.

The Minnesota department of Public Health has translated their measles fact sheet into Somali.

It was noted that Mr. Wakefield has discussed a study on the Somali autism prevalence question:

Patti Carroll, an organizer of Wednesday’s meeting at the Safari restaurant, said that Wakefield is helping to build support for a study about rising autism rates in the Somali community.

What wasn’t mentioned is that the National Institute of Mental Health, the Centers for Disease Control and Autism Speaks are already starting a project to study the question.

I can’t help but think back to one of the Jenny McCarthy interviews a few years back. She made a comment that maybe people will have to start dying of vaccine preventable diseases before people take her seriously. My guess is that she wasn’t expecting outbreaks that could be so directly tied to her, her organization (Generation Rescue) and one of her mentors (Andrew Wakefield).

Detection of Plasma Autoantibodies to Brain Tissue in Young Children with and without Autism Spectrum Disorders

25 Mar

Researchers at the MIND Institute published studies in the past few years correlating antibodies to brain tissue and autism. The first study of this sort (that I recall) studied whether the mother had antibodies to fetal brain tissue: Autism: maternally derived antibodies specific for fetal brain proteins. Other studies have looked at autoantibodies within the plasma of the autistics themselves: Detection of autoantibodies to neural cells of the cerebellum in the plasma of subjects with autism spectrum disorders.

The idea is fairly simple. If the mother or the autistic has antibodies against brain tissue, this might lead to an increased risk of autism.

There are even patent applications in for use of these methods to For example, a 2011 patent application US20110038872A1: METHODS OF DIAGNOSING AND TREATING AUTISM:

Determining a risk of an offspring for developing an autism spectrum disorder comprises identifying in a biological sample from the mother of the offspring in the presence of maternal antibodies that bind to the biomarkers

This past week, another paper from the MIND group came out:

Detection of Plasma Autoantibodies to Brain Tissue in Young Children with and without Autism Spectrum Disorders

In this study they looked for autoantibodies and compared autistics and non-autistics. They found no differences between the groups in frequency of autoantibodies.

Abstract
Autism spectrum disorders (ASDs) are characterized by impaired language and social skills, often with restricted interests and stereotyped behaviors. A previous investigation of blood plasma from children with ASDs (mean age = 5½ years) demonstrated that 21% of samples contained autoantibodies that reacted intensely with GABAergic Golgi neurons of the cerebellum while no samples from non-sibling, typically developing children showed similar staining (Wills et al., 2009). In order to characterize the clinical features of children positive for these autoantibodies, we analyzed plasma samples from children enrolled in the Autism Phenome Project, a multidisciplinary project aimed at identifying subtypes of ASD. Plasma from male and female children (mean age = 3.2 years) was analyzed immunohistochemically for the presence of autoantibodies using histological sections of macaque monkey brain. Immunoreactivity to cerebellar Golgi neurons and other presumed interneurons was observed for some samples but there was no difference in the rate of occurrence of these autoantibodies between children with ASD and their typically developing peers. Staining of neurons, punctate profiles in the molecular layer of the dentate gyrus, and neuronal nuclei were also observed. Taken together, 42% of controls and subjects with ASD demonstrated immunoreactivity to some neural element. Interestingly, children whose plasma reacted to brain tissue had scores on the Child Behavior Checklist (CBCL) that indicated increased behavioral and emotional problems. Children whose plasma was immunoreactive with neuronal cell bodies scored higher on multiple CBCL scales. These studies indicate that additional research into the genesis and prevalence of brain-directed autoantibodies is warranted.

” Immunoreactivity to cerebellar Golgi neurons and other presumed interneurons was observed for some samples but there was no difference in the rate of occurrence of these autoantibodies between children with ASD and their typically developing peers.”

A GPS for the Developing Human Brain

24 Mar

In his Director’s Blog, Tom Insel of NIMH has a piece “A GPS for the Developing Human Brain“. I found the piece very interesting in terms of mapping gene expression within the brain and how expression varies across the brain and across development. Given that this is a government publication, I feel that it is appropriate to copy it in total here:

One of the most surprising gaps in our knowledge about brain disorders is our ignorance about the human brain. With 100 billion neurons and a thousand times that many connections, mapping the human brain is not a trivial undertaking. Of course, early in the last century, the general regions were mapped out with numbers assigned to different cortical areas. But even a century ago, it was clear that these regional maps would not be adequate to define the location of the hundreds, perhaps thousands of different types of cells in the brain, along with all of their connections. As an analogy, we had the map of the states and, in some areas, maps of the counties, but we lacked the addresses for all the houses and we had little information about the occupants of those houses.

In 2007, the first comprehensive atlas with the regions, the houses, and the occupants was published for the mouse brain. The Allen Institute for Brain Science created an extraordinary resource for neuroscience by mapping the patterns of gene expression across the mouse brain.

Gene expression — technically known as “transcription” — is the process by which DNA is read out as RNA prior to being converted into protein. What can you do with a gene expression atlas of the mouse brain? A scientist who finds a gene associated with schizophrenia can surf this free, web-based atlas to find out where the putative schizophrenia gene is expressed in the mouse brain and what other genes are expressed in the same cells. Or a scientist who finds a specific brain area involved in learning or fear or addiction can use this atlas to identify the genes expressed uniquely in a specific part of the brain.

For these kinds of research projects, two years of laboratory work have now been collapsed to two minutes of web searching. Not surprisingly, the Allen Institute mouse brain atlas has become a daily search tool for labs across the world, a GPS for the mouse brain.

What about the human brain? The sheer complexity and size of the human brain was formidable, but the Allen Institute scientists developed tools, first with non-human primates and later with humans, to permit partial maps of gene expression in the brain. Of course, for NIMH, which focuses on developmental brain disorders, the most important achievement would be a map of the developing human brain. With the American Recovery and Reinvestment Act, we funded a major research effort on this goal, building on a unique NIMH Intramural collection of brains across the lifespan, expertise at Yale and University of Southern California, and the previous mapping success of the Allen Institute.

The results, the first “transcriptional” (gene expression) map of the developing human brain was posted last week at http://www.developinghumanbrain.org/. This initial release contains data from up to 16 different brain regions in 25 donors spanning ages from 9 weeks gestation through 40 years of age. Along with the map of gene expression, several tools are posted to allow anyone to begin to surf through this unprecedented harvest of developmental information. While there will be more to come in the near future, and the current data fall short of a comprehensive GPS, already we can see some remarkable and absolutely unexpected insights into human brain development.

For instance, about 80% of genes in the human genome are expressed in the brain. This is more than the percentage of the genome expressed in other organs and the pattern of expression within the brain is highly localized. The pattern of expression in development is markedly different than in the adult brain; so different that the fetal brain appears to be a different organ. But what is perhaps most surprising is that many of the transcripts are unique to development. That is, the same gene is spliced in novel ways to produce different RNA fragments and potentially unique proteins during development. Some have suggested that the genetic variations associated with mental disorders may selectively influence these developmental “splice variants”. (1) Now we have a catalogue of when and where these variants occur in the human brain, we can begin to compare the findings of genetics with the maps of development.

This new developmental human brain resource is a landmark. Much remains to be done, but already we have a resource that can serve the clinical neuroscience community the way the mouse atlas has served basic neuroscientists. As this atlas grows with more counties, more houses, and more occupants, we can expect a new era in our understanding of mental disorders. Indeed, a GPS for the human brain is no longer science fiction.

Seeking Organizations & Informal Groups to Sign-on: Support IDEA Fairness Restoration Act

24 Mar

From Wrightslaw: Seeking Organizations & Informal Groups to Sign-on: Support IDEA Fairness Restoration Act.

The Council of Parent Attorneys and Advocate’s (COPAA) and the Autism National Committee (AutCom) have drafted a letter to present to legislators in support of allowing families to be reimbursed for expert witness fees when they prevail in due process hearings.

They are looking for sign-ons to the letter from formal and informal groups:

Organizational sign-ons are welcome from disability organizations and groups, formal or informal; informal networks of attorneys and advocates and others; parent support groups; health, civil rights, and other related organizations or groups; nonprofit organizations, public interest law firms and organizations, associations, and any other supportive groups.

Here is the letter:

We, the undersigned organizations, urge Congress to pass the IDEA Fairness Restoration Act, S.613 and H.R. 1208. The bill would overturn the Supreme Court decision in Arlington Central School District v. Murphy by restoring Congress’ original intent in enacting the Handicapped Children’s Protection Act of 1986 that parents who prevail in administrative hearings and court actions be allowed to recover expert witness fees as well as attorneys’ fees.

Under the IDEA, schools are required to provide a free appropriate public education (FAPE) to children with disabilities. Congress recognized long ago that there will be times when parents and school districts differ as to what constitutes FAPE and that in those situations parents should be allowed to seek a hearing before an impartial administrative hearing officer. In those hearings parents must provide testimony from such expert witnesses as psychologists, doctors, therapists, and educational experts to prove that FAPE was not provided to their children. However, nearly 36% of children with disabilities live in families earning less than $25,000 a year; over two-thirds in families earn less than $50,000 a year. For both low and middle income parents, the right to due process is real only if the fees of these experts are shifted when they prevail.

Prevailing plaintiffs in ADA, Title VII, and other civil rights have the statutory right to recover expert witness fees. We ask Congress to take action to restore its original intent and provide this same right to parents who prevail in IDEA cases.

Nor would this bill be burdensome for school districts. Parents proceed to litigation only as a last resort. In 2003, the GAO reported that there were only 5 hearings per 10,000 special education students. Only parents who prevail could recover fees; parents who do not prevail could not.

We ask Congress to pass the IDEA Fairness Restoration Act, S. 613 and H.R. 1208. Restoring Congress’ original intent the Handicapped Children’s Protection Act is important to ensure that parents are not deprived of their right to due process because they cannot afford expert witnesses. Thank you very much for your support.

Please contact either of us if you have questions. Thank you very much for your support.

Jessica Butler, Congressional Affairs Coordinator, Autism National Committee (jessica@jnba.net)
Bob Berlow, Co-chair, COPAA Government Relations Committee (govrelations@copaa.org)

Please don’t hesitate to SHARE THIS with others.

To sign-on you must email your name, the name of your organization or group, and your city, state, zip code, and email address to – jessica@jnba.net (Jessica Butler, Congressional Affairs Coordinator, Autism National Committee)

Congress considers whether parents should be reimbursed for expert witnesses in special ed cases

23 Mar

Families in dispute with their school districts over special education have the right to file for a due process hearing. Most of the time, these disputes are settled in mediation. A few cases go to hearing. These hearings are expensive for both sides, and a major cost to families can result from expert witnesses: people like psychologists or speech/language pathologists who testify to the unique needs of the child in question.

In 2006 the Supreme Court of the United States heard a case on whether school districts were required to reimburse families for expert witnesses. In Arlington v. Murphy the Court ruled that families do not have the right to be reimbursed. This is true even if the family prevails. Or, to put it another way, if a district fails to meet the needs of a child and parents are forced to not only file due process but take the issue to hearing, the parents must pay the expert witnesses–even though the district was at fault.

Congress has recently introduced bills in both he House and Senate to reinstate expert witness fee reimbursement as The IDEA Fairness Restoration Act. Previous attempts to reinstate expert fee reimbursements have failed, but this is the first time the bill has been introduced in the House and Senate.

More on this at WrightsLaw and DisabilityScoop.

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