May 9, 2013

With a simple checklist, college students quickly and accurately rated home videos such as this one for autism-related behaviors.

The average waiting time for an autism diagnosis is 13 months and requires that a highly trained professional administer one of two behavioral tests. The Autism Diagnostic Observation Schedule (ADOS) takes 90 minutes. The Autism Diagnostic Interview-Revised (ADI-R) takes up to three hours.

Dennis Wall, Ph.D., is leading a team at Harvard Medical School that is trying to clear the logjam with a short, practical screen for autism. At this year’s International Meeting for Autism Research (IMFAR), Dr. Wall received the prestigious Slifka-Ritvo Innovation in Autism Research Award for this clinical research. The award comes with a research grant to further test the screen for reliability.

Dr. Wall directs Harvard Medical School’s Computational Biology Initiative. He is also an advisor for bioinformatics and genomics at Autism Speaks.

Early results suggest high accuracy
Dr. Wall’s screening tool asks parents to answer seven questions and upload a 5-minute home video of their child in a social situation such as a play date or birthday party. With minimal training, college students score each video against a checklist for eight autism-related behaviors. In early assessment with more than 100 families, the short screen matched the results from a full clinical evaluation around 90 percent of the time.

Dr. Wall’s team developed the test by using “machine learning,” an automated approach for recognizing patterns. They used it to hone in on the most important information being gleaned by the ADOS and ADI-R diagnostic checklists. They then used this information to create the short parent questionnaire and develop simple instructions that nonprofessionals could use to evaluate the home videos.

Families invited to participate through website
To further test and improve their screening tool, Dr. Wall’s team is reaching out to parents whose children have received a full diagnostic evaluation for autism. Families can fill out the brief questionnaire and upload a home video at this website.

“The award is a tremendous honor and an opportunity to help move our work into clinical and practical settings where it will have real impact on families,” Dr. Wall says. “We hope further testing over the next several months will provide the data needed to begin offering this solution to families. Our goal is to make early detection and treatment a reality for families across the globe, and we hope this research will be one solid step forward towards that goal.”

Editor’s note: Click here for complete coverage of the publication of the DSM-5 diagnostic manual and learn more about how Autism Speaks is taking a proactive role in helping ensure that it does not result in lost services to those affected by autism. 

May 21, 2013

Autism Speaks extends our deepest sympathies to the families affected by this week’s devastating tornadoes in the Midwest. We are working hard to provide information, resources, and assistance to families affected by autism who have experienced or continue to experience the effects of these horrible events. 

AutismCares

AutismCares provides grants for individuals with Autism Spectrum Disorders during times of crisis or unplanned hardships. Financial support awards provide financial relief for individuals with ASD and their families to help cover costs associated with critical living expenses.

Autism Response Team

The Autism Speaks Autism Response Team is taking calls from families affected by autism and the tornadoes. Trained staff members (both English and Spanish speaking) are available to provide support and resources during this difficult time. Families can call the Autism Response Team at 1-888-288-4762, en Español at 888-772-9050, or email us at [email protected]. 

Autism Safety Project

The Autism Safety Project provides information for families and First Responders with information and guidelines for communicating with individuals with Autism Spectrum Disorder (ASD) in emergency situations.

American Red Cross

Find help in your area. Find an open shelter, search the safe and well listings, and read disaster recovery guides.
www.redcross.org/find-help

Contact your Local American Red Cross
www.redcross.org/find-your-local-chapter

Find an Open American Red Cross Shelter
www.redcross.org/find-help/shelter

Federal Emergency Management Agency

FEMA’s mission is to support our citizens and first responders to ensure that as a nation we work together to build, sustain, and improve our capability to prepare for, protect against, respond to, recover from, and mitigate all hazards. 
www.fema.gov

Apply for Assistance from FEMA
www.fema.gov/apply-assistance 
If you do not have access to a computer, you can apply for assistance via your smartphone at m.fema.gov, or by phone by calling (800) 621-3362 or TTY (800) 462-7585 for people with speech or hearing disabilities.

Tips from FEMA: What to do Before, During and After Tornadoes 
FEMA’s ready.gov provides tornado-specific tips, information about putting together safety plans and more.
www.ready.gov/tornadoes

Tips from FEMA: Coping with Disaster
The emotional toll that disaster brings can sometimes be even more devastating than the financial strains of damage and loss of home, business, or personal property. FEMA has put together a page of tips to help you and your family cope with the aftermath of natural disasters. 
www.fema.gov/coping-disaster 
A special section on Tips for Helping Children Cope with a Disaster: 
www.fema.gov/coping-disaster#4

Find a Disaster Recovery Center Near You 
A Disaster Recovery Center is a readily accessible facility or mobile office where applicants may go for information about FEMA or other disaster assistance programs, or for questions related to your case. The Disaster Recovery Center (DRC) Locator allows individuals to search for DRCs nearest to their location. DRC Locator also provides additional information about each DRC, such as hours of operation, services offered, and driving directions to the DRC.
www.fema.gov/disaster-recovery-centers

 For more information or resources, contact our Autism Response Team at 888-288-4762 (en Espanol 888-772-9050) or email us at [email protected].

May 20, 2013

New series of public service advertisements in English and Spanish designed to reach African American and Hispanic parents

May 20, 2013

Extending its award-winning “Learn the Signs” campaign, Autism Speaks…

May 20, 2013

In the wake of the tragic events that took place in California and Alabama in the last week, we’d like to express our heartfelt condolences to the families of Mikaela Lynch and Owen Black, and also offer thanks to the searchers. Unfortunately, wandering-related tragedies are far too common in the autism community. In a 2012 study funded by Autism Speaks through our support of the Interactive Autism Network (IAN), nearly half of parents surveyed reported that a child with ASD had attempted to wander or run away at least once after age 4.

May 18, 2013

ST. PAUL (May 18, 2013) — The Minnesota Legislature has sent Governor Mark Dayton a bill that would make Minnesota the 33rd state, and the first in 2013, to enact autism insurance reform. The reforms are included in an omnibus health care bill approved late Friday night 73-61 by the House of Representatives and today 39-28 by the Senate.

Governor Dayton is expected to sign the bill which would take effect in January 2014.

Sponsored by Rep. Kim Norton (DFL-Rochester), the measure applies to state-regulated large group health plans which would be required to cover speech, occupational, physical and behavioral therapy, including Applied Behavior Analysis (ABA), up to age 18. An estimated 750,000 state residents would gain coverage. State employees will be added no later than 2016.

The Dayton administration hopes to also extend coverage to the small group and individual markets through the health exchanges it creates under the Affordable Care Act.

The bill also includes co-pay relief for families covered under the TEFRA disabilities program and a $12 million early intervention program for children up to age 18 who are enrolled in the state’s Medical Assistance (MA) program. The early intervention program will provide access to behavioral therapy, such as ABA, and will include training for providers in culturally appropriate techniques.

The provisions in Norton’s bill were incorporated into HF.1233, the Omnibus Health and Human Services Finance Bill, which was passed by the legislature. The legislation became more urgent after a landmark 2001 court settlement with Blue Cross Blue Shield of Minnesota expired in late 2011, stripping families of the state’s only coverage starting last year.

“Autism Speaks commends the hard work of Representative Norton and the Dayton administration in producing a comprehensive response to the lack of autism coverage in Minnesota,” said Lorri Unumb, Esq., Autism Speaks’ vice president of state government affairs. “We look forward to continuing our work with our Minnesota champions to extend coverage to all families.”

In addition to Minnesota, legislatures in North Carolina, Oregon and Nebraska are considering autism insurance reform bills. Similar measures advanced earlier this year in Hawaii, Utah, Georgia and Tennessee and are expected to be considered again in 2014.

States with existing autism insurance reform laws are expanding benefits. New Mexico has enacted a new law extending benefits under its existing law to public employees. Texas is nearing a final vote to eliminate the age cap on its law and California is moving a measure to extend its 2011 law, set to expire next year, another five years to 2019.

May 18, 2013

On May 18th, the American Psychiatric Association (APA) released a new version of the Diagnostic and Statistical Manual of Mental Disorders, or DSM.  The DSM is the standard reference that healthcare providers use to diagnose mental and behavioral conditions. The new version is referred to as the “DSM-5.”

Answers to Frequently Asked Questions about the New DSM-5

Experts at Autism Speaks have put together answers to your questions to help you better understand what these changes mean and how they might affect your loved one’s diagnosis and access to services.

Letter from Autism Speaks Chief Science Officer Regarding the DSM-5

Geraldine Dawson, Ph.D. has written a letter to the community about the new changes and what we are doing at Autism Speaks to help the autism community as these changes take effect. 

DSM-5 Live Chat

On Monday, May 20th, we hosted a Live Chat with Alycia Halladay, Ph.D., Autism Speaks senior director, environmental and clinical sciences and Lisa Goring, vice president of Family Services. Read a transcript of their answers to your questions regarding the DSM-5 changes.

DSM-5 News and Updates from Autism Speaks

Stay up-to-date on all of the news, information and resources we have related to the DSM-5. 

We Want Your Feedback

To ensure that all who need autism-related services continue to receive them, we’ve developed two surveys – one for individuals and families affected by autism and one for professionals. 

Autism Response Team

Questions or concerns? Our Autism Response Team is here to help! Call us at 888-AUTISM2 (En Espanol 888-772-9050) or email us at [email protected].

DSM-5 Information from the American Psychiatric Association

This website from the APA provides information on implementation of the manual, answers frequently asked questions, lists DSM-5 corrections, and provides a mechanism for submitting questions and feedback regarding implementation of the manual.

May 18, 2013

A letter and personal invitation from Autism Speaks Chief Science Officer

May 18, 2013

 
Dear friends,
At its annual meeting this weekend, the American Psychiatric Association released the long-anticipated fift…

May 16, 2013

CDC releases new report on the prevalence of child mental health conditions in the U.S.

CDC releases new report on the prevalence of child mental health conditions in the U.S.

May 16, 2013
In an effort to present a com…

May 16, 2013

This Saturday, the American Psychiatric Association (APA) will release a new version of the Diagnostic and Statistical Manual of Mental Disorders, or DSM.  The new version is referred to as the “DSM-5.”

We have put together a few resources to help you while you wait!

Answers to Your Frequently Asked Questions about the New DSM-5

Experts at Autism Speaks have put together answers to your questions to help you better understand what these changes mean and how they might affect your loved one’s diagnosis and access to services.

DSM-5 Live Chat with Autism Speaks Experts!

Do you want to learn more? Join us on Monday, May 20th at 7PM EST for a Live Chat with Alycia Halladay, Ph.D., Autism Speaks senior director, environmental and clinical sciences and Lisa Goring, vice president of Family Services. Alycia and Lisa will help answer your questions regarding the DSM-5 changes.

We’re Here to Talk!

Questions or concerns? The Autism Speaks Autism Response Team is here to help! Call us at 888-AUTISM2 (En Espanol 888-772-9050) or email us at [email protected]. Learn more about what ART can do for you here.

May 16, 2013

SACRAMENTO (May 16, 2013) – The California Senate voted 36-0 to extend the state’s 2011 autism insurance reform law, which is set to expire next year, until 2019. Sponsored by Seante President pro Tem Darrell Steinberg, the measure, SB.126, moves next to the Assembly.

Steinberg sponsored the existing 2011 law (SB.946) which is due to expire in mid-2014.

“An estimated 12,500 Californians are currently receiving early autism treatment under the 2011 law with estimated savings to taxpayers of $200 million annually in special education costs, which were previously funded by school districts or regional centers,” Steinberg said after the vote. “Californians with autism now have access to the most extensive insurance coverage of any state in the nation.”

The current law requires state-regulated health plans to cover behavioral health treatment, such as Applied Behavior Analysis, consistent with other benefits covered under their policies. Insurers are also required to maintain an “adequate” network of ABA providers.

Steinberg has also committed to working with Governor Jerry Brown to restore behavioral treatment for children with autism who lost their services during the transition from the Healthy Families program to Medi-Cal.

“While SB 946 is a proud achievement, it’s not nearly enough,” said Steinberg. “This year we intend to fight to make sure all kids regardless of whether they’re on public or private insurance get the benefit of behavioral therapy. We must seek to include behavioral treatment for autism in Medi-Cal Managed Health Care to ensure children receive necessary and equitable services.”

May 16, 2013

WASHINGTON, DC (May 16, 2013) — In its fourth annual survey of military families, Blue Star Families found widespread dissatisfaction among special needs parents in the military with medical, educational and housing services, including access to ABA. Of the 5,125 military families who responded, 19 percent said they were receiving special needs services through the military; of those, 36 percent cited autism as their child’s disability.

A national, non-profit network of military families from all ranks and services, including guard and reserves, Blue Star Families conducted the online survey in November 2012 and obtained 5,125 responses from service members stationed domestically and abroad. The survey found that 31 percent of the special needs parents enrolled in the military’s Exceptional Family Member Program (EFMP) felt their participation had harmed their military careers.

“Navigating the military healthcare system to obtain services can be challenging for caregivers for Exceptional Family Members (EFM),” the report said. “The National Council on Disability noted that it is even harder for young parents, those with more than one exceptional family member, those who themselves are exceptional family members, and those with a deployed service member.”

Fewer than half of the families responding to the survey said they felt supported by their chain of command, the EFMP at their base or the surrounding civilian population. In addition, shortcomings were found with TRICARE, the Department of Defense health insurance program for active duty and retired personnel. 

“Families may also struggle when trying to obtain recommended specialty services that are not covered by TRICARE, such as applied behavior analysis (ABA) therapy for children with autism,” the report found. ABA has been restricted to active duty members by TRICARE and a one-year pilot program ordered by Congress last year for all service members has been delayed indefinitely due to budget issues. In addition, TRICARE has been sued in a federal class action suit for restricting access to ABA.

The survey also addressed the financial impact of paying out-of-pocket for services not covered under TRICARE by quoting two Navy spouses.

“He probably would’ve stayed in (active duty) if he felt that we would not have to spend so much money out of pocket obtaining speech, occupational, and physical therapy for our son,” said one. The other Navy spouse said, “Moving duty stations requires military families to re-enroll in EFMP program services. This means that children may be waiting for months, often times a year, to access services.”

Access to state Medicaid waivers also arose in the Blue Star report, which noted that every time a military family redeploys to another state they drop to the bottom of the new state’s waiver list.

“Sixty-four percent of respondents reported difficulty accessing community/state-based supports, such as Medicaid waiver benefits,” the report found. “In addition, 55 percent of respondents with an EFM also reported difficulty finding adequate housing when relocating.”

Special needs parents overall said they were satisfied with their child’s educational services, until they are required to enroll into another school district as a result of redeployment. Two thirds of the respondents said educational accommodations were “challenging” following relocation.

“New school districts will honor the previous individualized education program (IEP), but the district has authority to decide how the goals and objectives will be met and it may not be through the same exact program or services,” the report said.

Blue Star Families in the report urges better supports for special needs families when they relocate, including the ability to maintain Medicaid waiver services when they move to another state. Autism Speaks is supporting efforts to make TRICARE coverage of ABA for all military members permanent and at the levels prescribed by medical professionals.