“Research aimed at improving early detection of autism has largely focused on measurement of social and communication development,” said Dr. Rebecca Landa, study author and director of the Center for Autism and Related Disorders at Kennedy Krieger Institute. “However, disruption in early motor development may also provide important clues about developmental disorders such as autism.”

On May 17 in Toronto, Dr. Landa will present this and other new research on motor delay and how it impacts development of language and social skills. The spring International Meeting for Autism Research is an annual scientific meeting providing international researchers with an opportunity to share their findings on ASD.

Before Dr. Landa’s current study, the head-lag text has not been used to diagnose ASD. Her team assessed infants in a “pull-to-sit” task, a simple measure of postural control in infants. Typically developing infants achieve this type of postural control by four months of age.

Dr. Landa’s team studied two groups of infants. The first group consisted of 40 infants, ages 5.6 to 10 months, considered to be at high genetic risk because a sibling had autism. Dr. Landa and her team examined their ability to maintain head alignment when being carefully, yet firmly, pulled by the arms from lying flat on his/her back to a sitting position. Infants were scored according to whether their head maintained alignment with the spine, or was in front of the spine, during the task. Lack of this head control indicated head lag.

The second group examined six-month-olds at a single point in time for the presence of head lag. Dr. Landa and her team found that 75% (n =15) of high-risk infants exhibited head lag, compared to 33% (n =7) of low-risk infants, further supporting that head lag is more likely in infants at risk of developing ASD. “Our findings show that the evaluation of motor skills should be incorporated with other behavioral assessments to yield insights into the very earliest signs of autism,” said Dr. Landa.

“While previous research shows that motor impairments are linked to social and communication deficits in older children with autism, the field is just starting to examine this in younger children,” said Dr. Landa. “Our initial research suggests that motor delays may have an important impact on child development.”

Building on the head lag research, Dr. Landa’s team conducted a separate longitudinal study with 14-, 24- and 36-month-old children at high and low risk of developing ASD. The study found that motor delay becomes increasingly evident as children with ASD near their third birthday, yet not all children with ASD experience motor delay. Results showed that children with ASD who experience motor delays are more severely impaired by three years of age than children with ASD with no motor delays.

“While more research is needed to examine why not all children with ASD experience motor delay, the results of our studies examining motor development add to the body of research demonstrating that early detection and intervention for infants later diagnosed with autism is possible and remains crucial to minimize delays and improve outcomes,” said Dr. Landa.

To reach Dr. Landa’s team at the Kennedy Krieger Institute follow this LINK.

Recent discoveries in epigenetics could soon make a clinical difference for children with attention-deficit/hyperactivity disorder, autism spectrum disorder, and other conditions, according to an expert.

The implications go beyond targeting treatment for an individual child in your practice based on a specific genetic mutation, Dr. Hakon Hakonarson, director of the center for applied genomics at the Children’s Hospital of Philadelphia, said at a pediatric update sponsored by Miami Children’s Hospital. Recent advances point to gene alterations that modify shared pathways, so the potential for wider application beyond ADHD and ASD — such as unexpected discoveries related to pediatric neuroblastoma — is a real possibility.

Dr. Hakonarson is a member of ICare4Autism’s Advisory Council and will be speaking about the gene networks underlying autism targeted for therapeutic intervention at the upcoming ICare4Autism International Autism Conference being held in Israel.

Hakon Hakonarson, M.D., Ph.D., is an associate professor of Pediatrics at The University of Pennsylvania School of Medicine.  He is a physician-scientist and director of The Children’s Hospital of Philadelphia’s Center for Applied Genomics (CAG), a high-throughput highly automated genotyping facility founded to identify the genetic causes of complex medical disorders in children, such as autism and cancer, with the objective of developing new therapies.

Dr. Hakonarson has an extensive track record in human genetics and has developed an international reputation amongst his peers. He has served previously in several senior posts in the biopharmaceutical industry, including as the director of Inflammatory and Pharmacogenomics Research and the vice president of Clinical Sciences and Development and CSO.

Dr. Hakonarson has also been the principal and co-principal investigator on several NIH-sponsored grants, and he has published numerous high-impact papers on genomic discoveries and their translations in some of the most prestigious scientific medical journals, including Nature, Nature Genetics and The New England Journal of Medicine.

Time Magazine listed Dr. Hakonarson’s autism gene discovery reported in Nature, 2009, among the top 10 medical breakthroughs of that year. With over ten years of experience in pioneering genomics research and genome-wide mapping and association studies, Dr. Hakonarson has intimate knowledge of the complexities of large-scale genomics projects and has put together the necessary infrastructure and workflow processes to unravel these complexities.

Tammy Movsas, M.D., a postdoctoral epidemiology fellow at Michigan State University.

Researchers at Michigan State University have discovered a connection between length of pregnancy and the severity of autism symptoms.

The research suggests normal term children born with autism have less severe symptoms than children with autism who are born pre-term or several weeks late.

Researchers also say that children with autism who were born either preterm or post-term are more prone to self-injury compared with children with autism who are born on time.

The research appears online in the Journal of Autism and Development Disorders.

While it is not yet clear why there is an increase in symptoms of autism, Tammy Movsas, M.D., a postdoctoral epidemiology fellow, believes the reasons may be tied to some of the underlying causes of why a child is born preterm (prior to 37 weeks) or post-term (after 42 weeks) in the first place.

“We think about autism being caused by a combination of genetic and environmental factors,” she said. “With preterm and post-term babies, there is something underlying that is altering the genetic expression of autism.”

“The outside environment in which a preterm baby continues to mature is very different than the environment that the baby would have experienced in utero. This change in environment may be part of the reason why there is a difference in autistic severity in this set of infants.”

Researchers utilized an online database compiled by Kennedy Krieger Institute at Johns Hopkins University of nearly 4,200 mothers — with children with ASD ages 4-21 — between 2006 and 2010. It divided the data on births into four categories: very preterm (born prior to 34 weeks); preterm (34 to 37 weeks); standard (37 to 42 weeks); and post-term (born after 42 weeks).

The mothers were required to complete a pair of questionnaires regarding the symptoms of their children, and the results revealed very preterm, preterm and post-term children with autism had significantly higher screening scores for autism spectrum disorder than those born full term.

“The findings point to the fact that although autism has a strong genetic component, something about pregnancy or the perinatal period may affect how autism manifests,” said Nigel Paneth, M.D., an MSU epidemiologist who worked with Movsas on the paper.”

“This adds to our earlier finding that prematurity is a major risk factor for autism spectrum disorder and may help us understand if anything can be done during early life to prevent or alleviate autism spectrum disorder.”

ICare4Autism's Founder and CEO, Dr. Joshua Weinstein and Jersualem Mayor, Nir Barkat in front of ICare4Autism's Global Research Center on Mt Scopus in Jerusalem.

On August 1-2, 2012, more than 1,500 leaders in autism research, educationand policy from every continent will gather in Jerusalem, Israel, for ICare4Autism’s 2012 International Conference, “Autism: A Global Perspective”. 

The Conference will highlight groundbreaking research into the causes and treatments of Autism Spectrum Disorders, and serve as a catalyst for powerful new collaborations to tackle the global autism crisis.

Dr.Joshua Weinstein, ICare4Autism’s Founder and CEO explained that “Thanks to the latest advances in research and practice, autism and hope are no longer mutually exclusive, but the rapidly increasing rate of autism incidence represents an urgent call to global action. The time to act is now.”

Dame Stephanie Shirley, The British Government’s Founding Ambassador for Philanthropy, and Chairman of the Shirley Foundation, will deliver the Autism: A Global Perspective Keynote Address.

She will be joined by distinguished researchers and practitioners from more than 20 countries who will unveil their latest biomedical discoveries andeducational innovations.

The latest biomedical research will be presented by Dr. Eric Hollander, Chairman of the ICare4Autism Advisory Council  and Director of the Autism Spectrum Program at New York’s Albert Einstein College of Medicine/Montefiore Medical Center (Neuropsychopharmacology of Oxytocin and Inflammation in ASD); Dr. Randi Hagerman, Medical Director of the M.I.N.D. Institute/University of California Davis (New Initiatives in Autism Research and Practice); and Dr. Hakon Hakonarson, Children’s Hospital of Philadelphia Center for Autism Research (Gene Networks Underlying Autism Targeted for Therapeutic Intervention).

Policymakers including Juan Carlos Brandt (Chief, Advocacy, Department of Public Information, United Nations) and Eileen Hopkins (Expert Advisor to the World Health Organization on Autism) will share insights into challenges posed by the rising incidence of autism worldwide. 

Innovative and effective educational practices will be featured in presentations by Dr. S. Mariam Aljunied (Senior Autism Specialist, Singapore Ministry of Education); Dr. Carlos Marcin Salazar (Director of the National Autism Clinic of Mexico); Drs.  Tamar Weiss, Eynat Gal and Nirit Bauminger (Bar-Ilan University, Israel); and Dr. Pamela Wolfberg (Director, Autism Spectrum Program, University of California San Francisco). Attendees will tour the campus where ICare4Autism will open the world’s first Global Autism Research andEducationCenter in 2015.

ICare4Autism (InternationalCenterfor Autism Research & Education) is a New York-based charitable organization, founded in 2004 to catalyze breakthrough innovations in autism research, diagnosis and treatment.  For information:  www.ICare4Autism.org

Queensland Premier Anna Bligh

Australian politician, Anna Bligh has announced that $50 million of funding will go to new initiatives for education for special needs students across the state of Queensland. This announcement comes after reports that funding for services for children with autism in Australia was so dire that families were forced to leave the country.

Ms Bligh made the announcement at Mitchelton Special School as she continued to campaign around Brisbane today.

“Education matters to every child and I want to make sure every Queensland child gets a flying start with the best possible education and that means making sure we look after those students who have a disability or special need,” she said.

The announcement included a new autism center for excellence, $13.1 million to adapt the curriculum for children with autism, including 50 scholarships for postgraduate autism teacher studies, and a further $9.8m in training for principals and $8.2m for teacher aides.

“This package will see the biggest investment in professional development for teacher aides, teachers and principals that we’ve seen for many years,” Bligh said.

“It will also fund additional equipment to assist teachers who are working with students with special needs.”
The initiative will be funded through a combination of grants from the Queensland Education Trust and National Partnership Agreement funding.

Parents of children with autism in Regina, Canada are disappointed and concerned as a number of popular summer programs have been scaled back or cut altogether.

“You fight every day for services, and the summer program is the one time a year you get intensive services for five weeks, and then you really have nothing for the rest of the year,” Rip Smith said, whose son Max enjoyed the summer program.

The reason for the cuts to funding, which have reduced the five week program to two weeks, appears to be bureaucratic red tape.

In a field where highly trained and experienced professionals are a commodity, policies of the Regina Qu’Appelle Health Region are fencing out a large selection of qualified service providers.

The Autism Resource Center, who receives about one third of their funding from the Regina Qu’Appelle Health Region, says they are unable to contract service providers as the regions does not allow the agencies it funds to take the money and use it to contract services from someone else.

Parents are frustrated by these policies affecting the services their children receive however, the region is in discussions to find ways to make up for the reduced summer programs.

In New York state a new law signed by Gov. Andrew Cuomo in January will force private insurance providers to cover the treatment of autism spectrum disorders — a big help for many families who must pay for therapies or diagnoses out-of-pocket. But the law applies to things like physical, occupational and speech therapies, not programs administered with Medicaid funds like those provided by the Office for People with Developmental Disabilities.

Medicaid funds pay for services like respite and community habilitation services, and recreation programs. But a change to the state’s waiver system, and the perennial threats of cuts to Medicaid funding in Washington have families affected by autism worried.

According to The Arc’s 2011 Family and Individual Needs for Disability Supports (FINDS) survey 62 percent of families report services being cut in their communities, and 43 percent said services were cut at their schools.

There are also concerns in the autism community over families no longer being eligible for funding following changes to the definition of autism spectrum disorders in the upcoming volume of the Diagnostic and Statistical Manual of Mental Disorders.

In order to access crucial treatment, parents of children with autism are having to sell their homes or leave the country.

Governmental guidelines recommend early intervention for autism with a “minimum of 20 hours a week over two or more years” which can cost up to $50,000 a year. The government’s “Helping children with autism package” of $6000 a year covers only one hour a week, advocates say.

Nicole Rogerson from Autism Awareness Australia believes that as a result only wealthy families can provide their children with early intervention for autism. “It’s a travesty,” she said.

Ms Rogerson also runs a center for children with autism, which provide one of the best clinically proven programs Applied Behavioral Analysis. Wait lists for the facility are long and families are selling their homes to pay for the treatment.

Ms Rogerson believes the Government’s funding of autism is like putting a “Band-Aid on a gushing wound”. She believes something must be done to alleviate the financial pressure on families affected by autism.

The bill last year covered two tiers, offering birth to 12 coverage of $30,000 and adolescent to 18 coverage of $24,000. More care was allotted to the younger children as treatment, such as Applied Behavior Analysis, is most effective for children when they are young.

Delegate Mark Hunt, D-Kanawha and vice-chairman of the committee, has an autistic son that will “never be self-sufficient.” He urges action on HB 4260 because time is running out for many children who need the care. “There’s not a single child who’s received a single benefit from what we’ve done last year,” he said. “It’s too late for my son, but there are other people’s sons that we can still help. There are other people’s sons that we can still make a difference in. While these children are burdened, we’re fiddling.”

The House Judiciary Committee adopted the bill unanimously, and it will go to the Finance Committee before being reported to the full House.

As reported last week in our post, DSM Debate Continues, both the medical profession and general public have been stirred into a frenzy of petitions and campaigns against the proposed changes to the DSM autism criteria.  There has been widespread concern that the removal of Asperger’s disorder, and pervasive developmental disorder not otherwise specified (NOS) would leave some families no longer eligible for essential medical, social and educational services.

The APA has reassured those affected that no previously covered group will be left out in the cold. The changes would involve merging several diagnoses currently listed separately in the DSM-5 into a single umbrella category of “autism spectrum disorder.”

“The proposed criteria will lead to more accurate diagnosis and will help physicians and therapists design better treatment interventions for children who suffer from autism spectrum disorder,” said James Scully, MD, medical director of the APA, in a release.

“While final decisions are still months away, the recommendations reflect the work of dozens of the nation’s top scientific and research minds and are supported by more than a decade of intensive study analysis,” the APA states in the same release.

Neurodevelopmental Work Group member Bryan H. King, MD, believes that with the changes “we are going to be able to better characterize individuals with autism, in part because of clearer criteria that have been written to better account for people across the age span. And one could argue that this will actually make it easier for adolescents and adults, and even young children potentially, to meet criteria for diagnosis than was previously the case.”

A third public feedback period is scheduled to begin this spring.

Some people have attributed the current increase in autism diagnoses to widened criteria for diagnosis rather than any increased incidences. Proposed changes in the definition of autism would drastically reduce the ballooning rate at which the ASDs are diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services.

The definition is now being reassessed by a panel of experts selected by the American Psychiatric Association. The D.S.M., as the manual is known, is the standard reference for mental disorders, driving research, treatment and insurance decisions. Most experts expect that the new manual will narrow the criteria for autism; the question is how much.  The psychiatrists’ association has the difficult choice of deciding how to make the distinction between unusual and abnormal when defining autism.

Tens of thousands of people receive state-backed services to help offset the disorders’ disabling effects, which include sometimes severe learning and social problems, and the diagnosis is in many ways central to their lives. The proposed changes would probably exclude people with a diagnosis who were higher functioning.

Disagreement about the impact of the changes to the manual will almost certainly increase critical analysis of the finer details of the psychiatric association’s new definition. The revisions are about 90 percent complete and will be final by December, according to Dr. David J. Kupfer, a professor of psychiatry at the University of Pittsburgh and chairman of the task force making the revisions.