Robert MacNeil returns to PBS NEWSHOUR to report on Autism Today

30 Mar

The PBS Newshour is one of the premiere news programs in the US. Many will remember it as the MacNeil/Lehrer NewsHour, for Robert Macneil and Jim Lehrer. Robert MacNeil is returning from retirement to present a series of episodes on autism for autism awareness month.

Aside: wow, has it really been 16 years since Robert MacNeil retired?

The press release is shown below:

Robert MacNeil returns to PBS NEWSHOUR to report on Autism Today

6-part series airs during Autism Awareness Month

April 18 – 26, 2011

ARLINGTON, VA (March 29, 2011) – Autism – it’s a developmental disorder that has become increasingly prevalent, affecting 1 out of 110 American children. Despite years of study, little is known about its cause and access to treatment varies. Meanwhile, hundreds of thousands of American families hungry for answers struggle to care for the unique needs of children with the disorder. Among them, Robert MacNeil, co-founder of the PBS NewsHour and grandfather of Nick, a 6-year old boy with autism.

“I’ve been a reporter on and off for 50 years, but I’ve never brought my family into a story … until Nick,” MacNeil said, “because he moves me deeply.”

MacNeil and producer Caren Zucker tell the story of Autism Today in a 6-part broadcast series beginning Monday, April 18, 2011 and a robust online component where viewers can join the conversation. Ms. Zucker has produced many stories on autism and is the mother of a 16-year old son with autism.

Monday, April 18 An introduction to Nick and autism as a whole body experience: MacNeil brings viewers along on a visit with his daughter and grandson Nick in Cambridge, Massachusetts, to see how autism affects the whole family, including his 10-year-old sister, Neely. Nick experiences autism not just as a disorder in brain development but also as physical ailments affecting the whole body.

Tuesday, April 19 Autism Prevalence: Why are the numbers of children with autism increasing? At the UC Davis MIND Institute in Sacramento, California, MacNeil sees the wide range of different behaviors that comprise the autism spectrum. Anthropologist Richard Grinker argues that the rising numbers of children with autism is explained because conditions previously given other names, like mental retardation, are now included in the autism spectrum. Scientist Irva Hertz-Picciotto says the wider definition only partly explains the increased prevalence, pointing instead to a variety of environmental factors.

Wednesday, April 20 Autism Causes: The rise in autism numbers has caused a surge in research to find the causes. For the latest thinking, Robert MacNeil speaks with four leading researchers: Dr. Gerald Fischbach of the Simons Foundation, Dr. David Amaral of the MIND Institute, Dr. Martha Herbert of Harvard University and Dr. Craig Newschaffer of Drexel University.

Thursday, April 21 Autism Treatment: Although children with autism see doctors periodically, they go to school everyday. It is the school system that bears most of the burden of treating children with autism because treatment means education. MacNeil visits two schools in New York – a public school in the Bronx teaching 700 children with autism and a charter school created in Manhattan as a model of possibilities in educating children with autism. With only 30 students, it can use one-on-one teacher/student ratios employing intensive Applied Behavioral Analysis – the gold standard treatment for autism.

Monday, April 25 Adults with Autism: Although federal law mandates educational services for children with autism, there are virtually no services when they become adults. MacNeil profiles Zachary Hamrick in Mahwah, New Jersey, about to turn 21. As his family contemplates the uncertain future now facing hundreds of thousands of young people like him, his parents ask themselves, “What will happen when we die?”

Tuesday, April 26 Autism Policy: The NewsHour series ends with a discussion of the public policy issues raised in the series, including the enormous discrepancy in the quality and availability of services for children and future adults in what the federal committee that determines research priorities for autism now calls a “national health emergency” with a panel of experts including: Dr. Thomas Insel, Director of the National Institute of Mental Health, Catherine Lord, Professor of Psychology, Pediatrics and Psychiatry at the University of Michigan, Ilene Lainer, Executive Director of the New York Center for Autism – a private advocacy group, and John Shestack, a Hollywood producer and the co-founder of “Cure Autism Now” a former advocacy group.

PBS NEWSHOUR will host an online content hub that will offer easy access to video of all the pieces in the series, as well as web-only features that are part of Autism Today, including:

§ First Look Online: In a brand new online-on-air cross promotion, check the NewsHour’s website after each night’s broadcast during the week April 18: We’ll post the next chapter in the Autism Today series online by 7pm ET.

§ Autism 101 – A primer on autism, how it’s diagnosed, the spectrum of disorders, and available resources. We’ll also look at the costs of austim, through the lens of the families profiled in the series and others.

§ The Story of Donald – A new look at Caren Zucker and John Donvan’s profile of the first child diagnosed with autism as reported in The Atlantic.

§ Live Chat with Experts – Viewers can ask their questions directly to the experts and doctors profiled in the broadcast segments via live text chat moderated by PBS NEWSHOUR digital correspondent Hari Sreenivasan.

§ Ask Robin MacNeil – Hari Sreenivasan will preview the series with Robin MacNeil in a special interview on the Rundown news blog. MacNeil will also answer viewer questions after the series concludes.

§ Join us on Twitter, YouTube and Facebook: We want to hear how you or those you know are coping with autism. Use the Twitter hashtag #autismtoday to ask questions or join the conversation on the series.

PBS NEWSHOUR is seen five nights a week on more than 315 PBS stations across the country and is also available online, via public radio in select markets and via podcast. The program is produced by MacNeil/Lehrer Productions, in association with WETA Washington, DC, and THIRTEEN in New York. Major corporate funding for The NewsHour is provided by Chevron, Bank of America and Intel, with additional support from the William & Flora Hewlett Foundation, the Corporation for Public Broadcasting and public television viewers.

Wired: iPads Are Not a Miracle for Children With Autism

30 Mar

Wired has a piece up that purports to go against the hype on the iPad: iPads Are Not a Miracle for Children With Autism. It’s a provocative statement (even he says so). I wanted to say that it is a big strawman. For the most part the hype isn’t so big as to place the iPad into “miracle” status. But, then again, consider these pieces:

A Cure for Autism? Apple’s iPad has an App for That

Another piece had a title that stuck in my mind: Could the iPad be a Cure for Autism? When I searched for it, I found that the title had changed to
Could The iPad Be Used To Help Autistics?

Wired makes good points:

While there are some apps that are more specific to use with children with autism (like AAC apps), all apps can provide developmental experience depending on how they are used and the child’s own developmental trajectory and interests. You can’t have a “Top 10 Autism Apps.”

But to bring this back to the start, is the iPad a “miracle” for autistics (children or adults)? Depends on your definition of miracle, I guess. Is it a cure? No. The iPad and the iPod touch are excellent pieces of technology and have a lot to offer some people with disabilities. I think that I will paraphrase Shannon Rosa: the iPad is a force for good. It isn’t magic. It isn’t a cure. It is for many a step towards greater independence. Is a step towards greater independence a “miracle”? I think so. I take my miracles big or small.

Social-sexual education in adolescents with behavioral neurogenetic syndromes

30 Mar

A recent paper abstract I read brought up a very important topic which I don’t see discussed much: sex education for adolescents with developmental disabilities. I don’t know how good the paper itself is, but I agree with the conclusion: “Social and sexual education programs are of the utmost importance for adolescents with neurogenetic developmental disabilities. ” On one level I don’t want to think about sex and my kid. But I also have run into a belief that sex isn’t a topic to consider for people with developmental disability and autistics in particular. Perhaps I am naive, but I don’t see this as a good approach. I think sexuality is too important a topic to leave unaddressed. The discussion is going on. Just rarely in the parent-oriented online world.

Isr J Psychiatry Relat Sci. 2010;47(2):118-24.
Social-sexual education in adolescents with behavioral neurogenetic syndromes.

Plaks M, Argaman R, Stawski M, Qwiat T, Polak D, Gothelf D.
The Behavioral Neurogenetics Center, Feinberg Department of Child Psychiatry, Schneider Children’s Medical Center of Israel, Petah Tikwa, Israel.

Abstract
BACKGROUND: Adolescents with developmental disabilities have unmet needs in their sexual and social knowledge and skills. We conducted a sexual social group intervention in adolescents with neurogenetic syndromes, mainly with Williams and velocardiofacial syndromes and their parents.
METHOD: Ten adolescents with neurogenetic syndromes and 14 parents participated in a Social Sexual Group Education Program. The program was delivered in 10 biweekly sessions to the adolescents and their parents separately.
RESULTS: The focus of psychoeducation in both groups was the adolescents’ self-identification, acceptance of the developmental disability, independence, establishment of friendship and intimate relationship, sexual knowledge and sexual development, and safety skills. Change in independent activities of adolescents and in their concept of “Friend” was measured.
CONCLUSIONS: Social and sexual education programs are of the utmost importance for adolescents with neurogenetic developmental disabilities. These programs should start already before adolescence and follow the children into young adulthood.

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.”

← Older Entries
Newer Entries →