3/21 - Latest in Autism News

Grandma knows best: New research explains how family members can impact an autism diagnosis

Children who have older siblings or frequent interaction with grandparents are diagnosed with autism spectrum disorders (ASD) earlier than those who do not, according to new research conducted at The Seaver Autism Center for Research and Treatment at Mount Sinai, and published in the journal Autism. This study is the first to ask not only parents, but also friends and family members who had contact with the child, about their early observations of the child.

Study results show that approximately 50 percent of friends and family members reported that they had suspected a child to have a serious condition before they were aware that either parent was concerned. Maternal grandmothers and teachers were the two most common relationship categories to first raise concerns.

"About half of the family and friends who reported being concerned about a child were reluctant to share their concerns," says Joseph D. Buxbaum, PhD, Director of The Seaver Autism Center for Research and Treatment at Mount Sinai and co-author of the paper. "Our work shows the important role that family members and friends can play in the timing of a child's initial diagnosis of autism. Since early detection of ASD is critical to effective treatment interventions, we hope the study will serve as a call-to-action to encourage family and friends to share concerns early on."

Study researchers conducted an online survey of 477 parents of children with autism. In addition, they carried out novel, follow-up surveys with 196 "friends and family," who were referred by parents. Their findings indicated that family structure and frequency of interactions with family members had significant effects on age of diagnosis. Specifically, they found that frequent interaction with a grandmother reduced the age of ASD diagnosis by 5.18 months, and frequent interaction with a grandfather reduced the age of diagnosis by 3.78 months.

Previous research has found that parents' behavior affects the age of diagnosis, but a major finding of this study is that individuals other than parents play a key role in recognizing that there is a problem.

"Many parents avoid seeking help to find a diagnosis for their child, even though they know something might be wrong," says study co-author Nachum Sicherman, PhD, Carson Family Professor of Business at Columbia Business School. "They often ignore signs of a larger problem and look the other way, making the role of close family members and friends vital to accelerating diagnosis and helping a child's condition."

While interactions with grandparents and friends played an important role, family structure also impacted the age of diagnosis. Children with no siblings were diagnosed 6 to 8 months earlier than children with siblings. Among children with siblings, children with older siblings were diagnosed approximately 10 months earlier than those without older siblings, suggesting that older siblings may serve as a reference point, helping parents calibrate whether younger siblings are on target developmentally.

The study findings suggest that there are opportunities to achieve an earlier diagnosis by tapping into the feedback and wisdom of family, friends, and caregivers who have exposure to children in a family.

March 15, 2017,  Materials provided by Mount Sinai Health SystemNote: Content may be edited for style and length.

3/13 - Latest in Autism News

Don't be distracted: The real issues in autism are threats to funding, services

Researchers argue that renewed debate about debunked science is diverting attention from real risks to crucial care and services

 With so much focus in recent months on the scientifically discredited notion that childhood vaccines cause autism, the real threats to health care and services for people with autism and other disabilities aren't being given enough attention, argue two leading health policy experts.

"President Donald Trump's apparent openness to a long-debunked link between vaccines and autism risks encouraging Americans to stop vaccinating their children, posing a serious public health threat," the researchers write in the March 9 issue of the New England Journal of Medicine. "Meanwhile, renewed attention to disproven theories about autism may be distracting us from growing threats to essential policies that support the health and well-being of people with autism or other disabilities."

The piece is authored by Colleen L. Barry, PhD, MPP, Fred and Julie Soper Professor and Chair of the Department of Health Policy and Management at the Johns Hopkins Bloomberg School of Public Health, and David S. Mandell, ScD, Professor and Director of the Center for Mental Health Policy and Services at the University of Pennsylvania.

If advocates and policymakers are focused on defending long-settled science, Barry says, they may not have the bandwidth to consider the potential consequences of efforts to roll back key protections in the Affordable Care Act (ACA) and the Individuals with Disabilities Education Act (IDEA) for people with autism and other disabilities.

The Affordable Care Act, which lawmakers in Washington have vowed to repeal, has broadened access to health insurance for low-income people living in 31 states and the District of Columbia through expansions of the Medicaid program. Medicaid is the largest health care payer for people with autism and developmental disabilities, providing access to needed services that many could not otherwise afford. Congress is also considering proposals to transform Medicaid to a state block grant program, and Barry and Mandell caution that this change would likely reduce states' funding to pay for services and allow them to opt not to cover critical services for autism. 

"These rollbacks could be devastating for children and adults with autism and other disabilities," Barry says. "It is important not to let the controversy over the de-bunked link between vaccines and autism distract from what is at stake in terms of the potential loss of critical benefits this vulnerable group relies on."

The ACA also requires Marketplace health plans to cover ten 'essential health benefit' categories including services important to people with autism and other disabilities such as therapies to improve skills of daily living, speech and language therapy, and mental health treatment.

The authors also flag concerns about the future of the Individuals with Disabilities Education Act (IDEA), which guarantees a free and appropriate education for all children with disabilities. Children with autism rely heavily on school-based services from minor accommodations and speech and language therapy to separate classroom instruction through IDEA. The new Secretary of Education, Betsy DeVos, and the new Attorney General, Jeff Sessions, have publicly questioned the value of IDEA, with DeVos suggesting states should be able to decide whether to enforce IDEA.

"People who care about preserving and expanding services for children and adults with autism need to pay attention to the conversations in Washington around the ACA repeal and threats to IDEA to make sure important protections and guarantees are not lost," Barry says.

"The risk of getting drawn into an outdated debate about vaccines and autism is that advocates and policymakers will spend their time and resources fighting on that flank, and could miss the window to respond on proposed cuts to critical services for those with autism coming from the other direction."

March 8, 2017, JOHNS HOPKINS UNIVERSITY BLOOMBERG SCHOOL OF PUBLIC HEALTH, Care for Autism and Other Disabilities - A Future in Jeopardy" was written by David S. Mandell and Colleen L. Barry.

3/7 - Latest in Autism News

Are mind-body therapies effective in autism?

Researchers have shown that mindfulness therapy had significant positive effects on depression, anxiety, and rumination in adults with autism spectrum disorder (ASD), and Nei Yang Gong therapy had a significant positive effect on self-control in children with ASD. These findings were reported in a review of 16 studies of mind-body therapies used to treat autism, published in The Journal of Alternative and Complementary Medicine, a peer-reviewed publication from Mary Ann Liebert, Inc., publishers. The article is available free on The Journal of Alternative and Complementary Medicine website until April 7, 2017.

In the article entitled "Autism and Mind-Body Therapies: A Systematic Review," Sarah Hourston, ND and Rachel Atchley, PhD, Oregon Health and Science University and National University of Natural Medicine, Portland, OR, reviewed the medical literature to identify the types of mind-body interventions being used to treat adults and children with ASD and for what purposes. The authors reviewed studies that targeted behaviors, psychological symptoms, emotional and mental health, and quality of life for affected individuals and their parents. Most of the studies were uncontrolled and included small numbers of subjects.

"Mindfulness practices that decrease aggressive and disruptive behaviors and self-control issues are important learnings for any of us," says The Journal of Alternative and Complementary Medicine Editor-in-Chief John Weeks, johnweeks-integrator.com, Seattle, WA. "That such outcomes were found in multiple trials with these ASD populations suggests that there is not only a strong rationale for larger studies, as the researchers concluded, but also for more rapid present application by parents, teachers, and healthcare workers in these communities."

March 7, 2017, MARY ANN LIEBERT, INC./GENETIC ENGINEERING NEWS

 

2/27 -Lastest in Autism News

Standard Autism Screening Test Online

Astandard autism screening test is now available online for children above the age of two on the State Welfare Organization website.

The test includes a set of 10 questions to help parents determine whether their children might have symptoms consistent with autism spectrum disorder (ASD).

If the answer is positive to more than three of the questions, children should be taken to one of the SWO autism centers mentioned on the website for additional diagnostic procedures.

If, however, it is not possible to identify the disorder at the centers, in that case the child must be taken to a specialist. Those who do not have access to the Internet can refer to SWO offices across the country where medical teams offer screening services.

According to Hussein Nahvinejad, rehabilitation deputy at the SWO, around 700 children have been referred to the centers since last December when the scheme was launched and 20 cases were diagnosed as having ASD, ILNA reported.

He urged families with young children to undertake the standard screening procedure so that if there is a problem it can be identified early. Symptoms may even go unrecognized in young children who have mild ASD or less debilitating handicaps.

Very early indicators that require evaluation by an expert include: no babbling or pointing by age 1; no single words by age 16 months or two-word phrases by age 2; no response to name; poor eye contact; and no smiling or social responsiveness.

Currently, around 3,000 autistic children are covered by the SWO which is expected to rise with the online screening project.

“Between 2,000 and 3,000 children with ASD might also be in special schools,” said the official.

   Tried and Tested

SWO experts had been working on the screening plan since 2010 and the online questionnaire is now tried and tested, and therefore completely standardized.

The project is also expected to help define the patterns of the disorder in the country within two or three years.

“Globally, autism is more common among girls than boys, but this has not been determined yet in Iran.”

The study of ASD patterns must be conducted by academic centers but the Health Ministry and universities of medical sciences have so far lagged in this matter.  

The SWO is not a research body but has taken the initiative to address the problem and “make up for academia’s non-performance” in this regard, Nahvinejad said.

Autism spectrum disorder refers to a group of complex neurodevelopment disorders characterized by repetitive and characteristic patterns of behavior and difficulties with social communication and interaction. The symptoms are present from early childhood and affect daily functioning.

Diagnosis of ASD includes assessment of intellectual disability and language impairment.

ASD occurs in every racial and ethnic group, and acrosssocioeconomic levels. But often, it is diagnosed when it is too late for intervention, imposing a great burden on the society.

The SWO has also been working on a screening test for Alzheimer’s, a chronic neurodegenerative disease that usually starts slowly and gets worse over time, and most often begins in people over 65 years of age.

It is being piloted in Tehran’s Ekbatan neighborhood, and once the test is standardized, it will be implemented nationwide.

February 27, 2017, Financial Tribune