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Launching ‘Move the Needle’ – A conference to advance early detection and intervention

March 5, 2012 3 comments

Posted by Autism Speaks Chief Science Officer Geri Dawson, Ph.D.

I want to share with you the excitement I felt at this week’s strategic planning meeting for our new Move the Needle Initiative. Autism Speaks brought together experts in the field of early detection and intervention for autism spectrum disorder (ASD), with representatives of federal agencies such as the U.S. Health Resources and Services Administration, the Centers for Disease Control and Prevention and the National Institutes of Health to create a national plan for lowering the age of diagnosis for ASD and improve access to high-quality early intervention services for all children with autism.

While researchers have made great progress in developing screening and diagnostic tools, the average age of diagnosis remains stubbornly close to 5 years, even higher among some ethnic minorities. Even after their children are diagnosed, many families lack access to the best early intervention therapies.

Our meeting was a great opportunity for exchanging ideas between disciplines. We heard from family members, pediatricians, policy makers, clinicians and researchers who are evaluating the best ways to put effective strategies and tools into pediatrician offices and the broader community. Representatives from all part of Autism Speaks attended to help us identify ways to harness our powers together to “Move the Needle.”

Experts from outside of autism, including one from the field of breast cancer, shared their knowledge of effective ways to improve early detection and access to services. On the first day of the meeting, we heard about the latest findings on screening, diagnosis, early interventions, access to services in underserved communities and innovative technologies that have the potential to improve access among underserved children and their families.

On day two, we split into working groups to develop solutions to the barriers that have interfered with the delivery of earlier diagnosis and treatment in our communities. This included taking the first steps toward creating a new agenda for collaboration between public and private organizations. We brainstormed ideas on how this could be done as soon as possible by building on the tremendous progress of recent years.

Though I have only begun to pull together our thoughts and ideas, I want to share a few important issues that floated to the top of the conversation:

  • Family empowerment was a common theme. Studies clearly show that greater engagement and empowerment on the part of families decreases parental stress and increases satisfaction with services. Likewise, we know that children who have the best outcomes tend to be those whose parents are actively engaged in treatment. We discussed several strategies to  empower families.
  • We explored a concept we call task shifting, to help address service shortages in many communities. We recognize that, through training, we can tap professionals such as nurses, “birth-to-three” service providers and community volunteers to provide services such as screening and family follow up. This approach can provide families with more professionally delivered services than, say, the typical pediatrician can offer.
  • We agreed that we must harness the potential of technology. Smart phones, iPads and video conferencing are all ready to be developed as tools for improving access to services – especially important for underserved populations such as children in rural areas.
  • Recognizing that pediatricians play a central role in autism screening, we discussed many ideas for enhancing pediatrician awareness and skills, including their ability to connect families with the services they need.  

These are just a few ideas that came out of this inspiring meeting. It provided a great start to realizing our long-term vision of creating a national agenda through private-public partnerships that focus our investments in research and services in ways that will lower the age of diagnosis and improve access to quality early interventions for all children.

Your feedback means the world to us. Please leave a comment and send us an email to ScienceChat@autismspeaks.org.

I know exercise is important. But with all our autism-related therapies, there’s no energy left. Advice appreciated.

March 2, 2012 12 comments

Today’s “Got Questions?” answer comes from Michael Rosanoff, M.P.H., Autism Speaks associate director for public health research and scientific review.

As challenging as it may be for anyone to develop and maintain a physically active lifestyle, the challenges can be amplified for individuals with autism spectrum disorder (ASD). We are constantly reminded how important it is to teach our kids to make healthy life decisions. But sometimes it can feel like an impossible task when they have other special needs and obstacles.

So it may be no surprise to learn that nearly a third of children with ASD are medically obese. The problem appears to increase with age, with obesity affecting over a third of young adults on the spectrum.

Inadequate physical activity is among the primary reasons for these high rates of obesity. But let’s be honest, getting active can be particularly challenging when a child or adult is also struggling with autism-related issues in areas such as self-control, motivation or physical coordination. And the sights, sounds and tactile aspects of team sports can feel overwhelming for someone with sensory integration issues.

But there’s great payoff in finding physical recreation activities that do work for an individual on the autism spectrum.

Did you know that exercise can decrease the frequency of negative, self-stimulating and self-injurious behaviors? This may be because the highly structured routines and repetitive motions involved in, say, running or swimming can distract from negative self-stimulating and repetitive behaviors. Physical activity can also promote self-esteem and improve mood and attention. For those who can participate in team sports, this type of structured activity can foster social interactions.

This isn’t to say that physical activity can or should replace proven behavioral interventions for ASD. Rather it can enhance their benefits.

For more information on recreational programs and activity tips for children and teens on the autism spectrum, see the physical fitness page in the Health & Wellness section of our website. To learn more about the importance of exercise for individuals with ASD, please see our special science report, “Sports, Exercise, and the Benefits of Physical Activity for Individuals with Autism.” And please use the comment section to share your experiences. What works and what doesn’t for you, your child or other loved one?

‘The Doctors Are In’ Live Chat

February 29, 2012 1 comment

Please join us Thursday at 3 pm ET/noon PT for this month’s “The Doctors Are In” live webchat. Our featured guest will be pediatric dentist José Polido, D.D.S., head of dentistry at Children’s Hospital Los Angeles, one of our Autism Treatment Network centers.

Dr. Polido was instrumental in developing the newly released ATN tool kit for dental professionals. He welcomes your questions about dental issues including dental hygiene and visits to the dentist.

The live webchat will be hosted by Autism Speaks Head of Medical Research Joe Horrigan, M.D.

We hope you’ll join us!

What: “The Doctors Are In” webchat, with Drs. Horrigan and Polido
When: March 1 at 3 pm Eastern; 2 pm Central; 1 pm Mountain; noon Pacific
Where: Join via the Live Chat tab on left side of the Autism Speaks Facebook page

Autism Journal Offers New Podcast on Gender Differences

February 22, 2012 Leave a comment

ImageThe international journal Autism released a new podcast in its Autism Matters series. Sven Bölte, Ph.D., director of Sweden’s Karolinska Institute Center for Neurodevelopmental Disorders, discusses his research on gender differences in cognitive function among high-functioning persons with autism spectrum disorder. Autism Matters podcasts are hosted by University of London psychologist Laura Crane, Ph.D.

The series is designed for a broad audience and aims to showcase the latest research published in the journal with an emphasis on real-world relevance.

Got Sleep Questions? We’ve Got a Webchat for You

February 21, 2012 6 comments

Please join us TODAY for a live webchat with neurologist and autism sleep expert Dr. Beth Ann Malow, M.D., of Vanderbilt University Medical Center, at 1 pm Eastern (noon Central; 11 am Mountain; 10 am Pacific).

Dr. Malow will be fielding questions on sleep issues affecting individuals on the autism spectrum and their families. This webchat is being held in tandem with the same day release of Sleep Strategies for Children with Autism: A Parent’s Guide, the latest free tool kit published by the Autism Speaks Autism Treatment Network (ATN) as part of its participation in the Autism Intervention Research Network on Physical Health (AIR-P). The tool kit will become available for free download on the ATN’s “Tools You Can Use” page the same day.

Joining Dr. Malow will be ATN Program Director Nancy Jones, Ph.D., who will be fielding general questions about ATN services and other Autism Speaks resources.

We hope you’ll join us:

What: Live “Sleep Chat” with neurologist and autism sleep expert Dr. Beth Ann Malow
When: Feb. 21, at 1 pm Eastern; noon Central; 11 am Mountain; 10 am Pacific
Where: Join via the Live Chat tab on left side of the Autism Speaks Facebook page.

Can vitamins, minerals and other supplements relieve autism symptoms?

February 3, 2012 17 comments

This week’s “Got Questions” answer comes from pediatric psychiatrist Joseph Horrigan, M.D., Autism Speaks assistant vice president, head of medical research.

Vitamin and mineral deficiencies are common among those with autism, and in many cases, they relate to overly restricted eating habits. This is understandable as autism spectrum disorders (ASD) are commonly associated with gastrointestinal problems and sensory issues with food textures and smells. It is also possible that the underlying biology of autism may cause deficiencies in the digestion of certain foods, which could affect vitamin intake. For example, a recent study documented that some children with autism and gastrointestinal disturbances have impaired carbohydrate digestion.

Normal growth and good health depend on the body absorbing and metabolizing the vitamins and minerals that are part of a well-rounded diet. In addition, studies have identified several examples of nutrient deficiencies affecting thinking and behavior – for example, the ability to focus or stay alert in school. Also, nutrient deficiencies such as those involving omega 3 fatty acids may worsen behavioral symptoms such as irritability and hyperactivity. As such, it’s entirely possible that taking supplements may improve such symptoms in some individuals with ASD – especially if the individual has clinical or laboratory evidence of low levels of crucial vitamins, minerals or other nutrients.

In recent years, researchers have looked deeper into how well particular vitamins, minerals and nutritional supplements lessen the severity or intensity of core autism symptoms – namely communication difficulties, social challenges and repetitive behavior. The results of these clinical studies have been mixed.

One recent large study examined the effect of an over-the-counter supplement called Syndion on 141 children and adults with autism, as compared to the effects of a placebo pill. The researchers reported that the product effectively raised levels of vitamins and minerals in the blood. They also showed that it produced no significant side effects during the 12-week study. The study did not demonstrate meaningful improvements in autism symptoms according to three out of the four assessment tools used. It did, however, show modest but statistically significant improvements on a fourth measure (the Parental Global Impressions-Revised questionnaire) in terms of hyperactivity, tantrums and receptive language.

When interpreting the meaningfulness of these results, readers may take note that the two lead authors were also the developers of the commercial product being tested.

Despite the limitations of this study, it raises important questions as to whether vitamins may be helpful in addressing the core symptoms of autism. It is important to continue supporting research that will provide parents and individuals with clear answers about the value of vitamins, minerals and other nutritional supplements in ASD. Autism Speaks is currently funding several projects to this end, including a new study investigating the possible role of carnitine deficiency in some individuals with ASD. (Carnitine is a nutrient used by cells to process fats and produce energy. It is abundant in red meat and dairy products, but some individuals appear to have difficulties absorbing and/or metabolizing it.)

We are also funding an ongoing collaborative project, through five Autism Treatment Network sites, to collect extensive information on the dietary intake and nutritional status of children with ASD.

If you are worried that you or your child may have a nutritional deficiency, supplements may be a good option to consider. It is important that you consult with your doctor about brands and dosages. Supplements vary in quality and potency, and some may have harmfully excessive levels of certain vitamins, minerals or other ingredients.

Explore more of the studies we’re funding through our grant search, and find more news and perspective on the Autism Speaks science page.

Live Webchat on the Genetics of Autism: What It Means for You

October 26, 2011 23 comments
Please join us for our first “Office Hours,” tomorrow, October 27, at 12:30pm EST, with Autism Speaks Chief Science Officer Geri Dawson, PhD, and her guest host: University of Toronto’s Steve Scherer, PhD, a world pioneer in the discovery and understanding of the genes and genetic changes that predispose to autism. Drs. Dawson and Scherer welcome your questions about the emerging understanding of genetic predisposition to autism, related studies supported by Autism Speaks and how this research can lead to new therapies and insights of direct benefit to families and individuals affected by autism. We welcome your advance questions at ScienceChat@autismspeaks.org.

Stephen Scherer, PhD, director of the University of Toronto's McLaughlin Centre for Genomic Medicine

Categories: Science

New Website for Autism Researchers (psst: You’ll like it too!)

October 19, 2011 1 comment

Ready to wonk out on autism science in a very cool way? The Simons Foundation Autism Research Initiative (SFARI) has launched a very slick new website. It’s aimed at scientists actively researching autism. But if a little technical language doesn’t turn you off, we think you’ll like it as much as we do. Congrats, SFARI folks. Check it out, Autism Speakies!

 

My child is sometimes aggressive – what can help?

October 7, 2011 44 comments

This week’s “Got Questions?” response comes from Simon Wallace, PhD, Autism Speaks director of scientific development for Europe.

A few months ago, I was visiting an autism clinic in Albania, one of the underserved countries where Autism Speaks is making a difference through our Global Autism Public Health Initiative. There I met a three-year-old girl receiving a diagnostic assessment for autism. Clearly, she wanted her parents to stop talking to us and take her outside. She kicked her father and bit his hand and then began slapping her own head. This young girl was trying to make her preferences known but lacked speech. Aggression was her way of communicating her needs.

Whatever their age, some individuals on the autism spectrum act out aggressively, and clearly, this can be distressing for everyone involved. In fact, aggression is among the most common challenges reported by parents of children and adolescents with autism.

What can help? I suggest working with your child’s physician and therapists on a four-stage approach to tackling this and other problem behaviors. The four steps are identification, understanding, management, and prevention.

By identification, we mean characterizing the problem behavior. As parents, you can write down the type of aggression your child demonstrates along with the time and setting of when the behavior occurs.

Next comes understanding. Specialists often use tools such as the Functional Behavioral Assessment decipher why a person with autism is behaving a certain way. In other words, what is the function of a given behavior for the person with autism? Is she telling you she doesn’t like what you’re doing?  Is he telling his teacher that the school work is too complex? Does she want something she cannot have? Identifying the “communication” behind the behavior is the first step to teaching appropriate behaviors that can convey the person’s needs and desires.

In addition, underlying problems can trigger aggression. Among those with autism, common triggers include disturbing breaks in routine, lack of sleep, jarring “sensory stimuli” (noises, lights, or smells) or even undiagnosed mental health problems. Clearly, it’s important to look beyond the behavior itself to identify the underlying cause.

When it comes to managing aggression, there are many options. The information you gathered in identifying and understanding your child’s behavior may guide you and your child’s healthcare providers in developing a plan.

An abundance of research supports the effectiveness of Applied Behavior Analysis (ABA) in helping children with autism learn new and effective behaviors—so that aggression is no longer needed to communicate wants and needs. Research as shown that, in many cases, ABA alone is effective in reducing aggressive behaviors.

When ABA is not effective, it is important to consider the possibility of an underlying medical condition. For example, we know that autism is frequently associated with sleep disturbances and gastrointestinal distress. Disrupted sleep is likewise associated with uncontrolled seizures. Addressing these medical conditions can make a difference in reducing aggressive outbursts. Also remember that the sudden onset of aggression may signal that your child is in pain, ill, or simply exhausted.

Medication has been used successfully to reduce aggression and self-injury in both children and adults with autism. Risperidone, in particular, has gone through extensive testing in this regard.  Both risperidone (Risperdal) and aripiprazole (Abilify) are approved by the U.S. Food and Drug Administration (FDA) for treating autism-related irritability, which includes aggression, tantrums, and self-injury. A recent study demonstrated that a combination of parent training (in behavior intervention) and risperidone reduced tantrums and other problematic behaviors in children with autism to a greater degree than did medication alone.

However, the decision whether or not to use behavior modifying medication is can be difficult. Autism Speaks has developed a medication decision aid to help you work with your child’s physician to determine whether this option fits your family’s goals and values. (Available for free download on our Tools You can Use Page.)

Finally we have prevention. Strategies to prevent aggression include working with your child’s therapists and teachers to create calming, predictable, and rewarding environments. Other helpful approaches include visual timetables and structured schedules—both of which can help smooth transitions between activities. Rewarding positive behavior and providing communication tools are additional strategies that many families find helpful.

I hope some of these suggestions help your child and family. And readers, I’d love you to use the comment section to share resources and ideas you’ve found useful.

New Blood Work Tool Kit for Families and Practitioners

September 20, 2011 9 comments

Posted by pediatric neuropsychologist Cassandra Newsom, PsyD, director of psychological education for the Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) of Vanderbilt University Medical Center (Nashville, Tennessee), a member of Autism Speaks’ Autism Treatment Network.

On a daily basis, I interact with families and their amazing children with autism spectrum disorders (ASDs). Like my colleagues, I have seen many children with ASDs struggle with the routine blood work associated with their healthcare and participation in autism research programs. Parents, too, often become anxious as the time for blood work draws near. Nurses and phlebotomists, in turn, sometimes struggle ineffectively to communicate with and calm these young patients. Clearly, the resulting stress worsens the discomfort associated with blood work and creates negative associations for all involved in the process.

For these reasons, our team wanted to pool our knowledge about pediatric pain management—particularly techniques proven to help calm children with ASD. We wanted to improve everyone’s experience—that of the child, parents, and healthcare providers. And, so, we set about developing two of this month’s new ATN tool kits: “Take the Work Out of Blood Work: Helping Your Child with ASD” and “Take the Work Out of Blood Work: Helping Your Patient with ASD

To help us, we recruited a talented group of graduate students and post-doctoral fellows from our Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program. Our LEND trainees set out across Vanderbilt’s campus—interviewing pediatric pain specialists, behavioral therapists, hospital-based child life specialists, and experts in developmental disabilities. They observed blood draws in a research clinic for children with developmental disabilities and scoured available research in the pediatric pain literature. Each team member made unique contributions to the final product based on their backgrounds in psychology, medicine, speech-language therapy, and developmental disabilities.

The resulting first draft of the tool kit focused on coping, distraction, and positive behavioral supports. We then solicited feedback from a parent advisory group at the Children’s Hospital Los Angeles, a fellow Autism Treatment Network site. As you would expect from such involved and dedicated parents, they helped us better envision the experience from the child’s perspective and provided insights into how we could encourage compassion and empathy on the part of the medical providers. They also reminded us that parents are the experts when it comes to their own child. So listen!

The team created colorful, engaging visual supports that tap into the strong visual processing abilities shared by many children with ASDs. In “test driving” the tool kits, we saw how these aids improved communication between medical providers, parents, and children. (Parents can even decide how much detail is appropriate for their child by selectively printing those visuals they feel provide enough—but not too much—detail.) Rewards are another important aspect of our guide, one that parents can tailor to their child’s interests. We also considered a child’s sensory needs in designing distraction activities and providing tips on setting up the clinic environment. Finally, both parent and provider tool kits actively promote collaboration between all treatment team members.

Our tool kits are now beginning to find their way into the hands of medical providers, researchers, and parents; and the response thus far has been overwhelmingly positive.

We hope you will download the parents or providers tool kit, give it a try, and share your experiences with us! Do you have tips for insuring successful blood draws or medical visits with your child or patient? Share your tips at atn@autismspeaks.org, and we will incorporate the best into our website at http://kc.vanderbilt.edu/asdbloodwork.

The Autism Speaks ATN/AIR-P Bloodwork Tool kits are the product of on-going activities of the Autism Speaks Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, HHS.

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