Autism: The International Journal of Research and Practice has published an important and interesting new editorial by Dr. David Mandell and Dr. Luc Lecavalier that challenges the methods the CDC uses to collect and publish autism prevalence data, now at 1 in 68. While acknowledging that tracking ASD is no easy task, the authors question whether the CDC’s surveillance studies should be used as a basis for estimates of prevalence.
Having an accurate estimate of the economic cost of autism has many implications for service and system planning. The most recent estimates are almost a decade old and had to rely on many estimates for which there were no good data. Today in JAMA Pediatrics, researchers, including ASF Scientific Advisory Board member Dr. David Mandell, updated older estimates and further expanded our understanding of costs by estimating them for two countries: the United States and the United Kingdom. They also estimated costs separately for children and adults, and for individuals with autism with and without intellectual disability. To estimate costs, researchers reviewed the literature on related studies, conducting a thorough search of studies that estimated direct costs, such as education and service use costs, as well as indirect costs, such as lost wages for family members and the individual with autism. They found that for individuals with autism and intellectual disability, the average lifetime cost was $2.4 million in the US and $2.2 million in the UK. For individuals without intellectual disability, the average cost was $1.4 million in both the US and the UK. For children with autism, the largest costs were for special education and parents’ lost wages. For adults with autism, the largest costs were residential care and lost wages.
Click here to read the full article.
By Rachel Zamzow
The International Meeting for Autism Research (IMFAR) in Atlanta, GA brought together 1,800 scientists, clinicians, sponsors and stakeholders for the purpose of exchanging ideas, fostering collaborations and ultimately examining the current state of autism research. The meeting also represented a refocusing within the field, as keynote speakers and presenters called the scientific community to adjust how major questions in autism research are approached.
One call for change involved embracing and addressing the inherent heterogeneity of autism. The notion that hundreds, likely thousands, of genetic changes and many environmental factors contribute to autism was reiterated throughout the meeting. In his keynote address, Declan Murphy of King’s College London emphasized the importance of stratifying participant populations by age to provide precision in exploring potential biomarkers for autism. During her talk on brain imaging, Dr. Adriana Di Martino from New York University noted symptom severity, co-occurring disorders, such as ADHD, and gender as additional factors to consider in addressing the heterogeneity of autism.
Presenters also discussed intervention as an area in need of refocusing. In his keynote, Murphy put up a blank slide to represent the current options of effective pharmacological treatment for core symptoms of autism. This dearth of available treatment options is a pressing concern in this field. Several presenters extended this idea to include individualized medicine as a goal for the future of autism research. In addition, Dr. John Sweeney of University of Texas Southwestern encouraged researchers to bridge the gap between clinical research and basic science to improve drug development and inform treatment options.
Another shift evident at IMFAR was increased emphasis on the voices of autism stakeholders, including autistic individuals themselves and their families. For example, John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s, was a prominent presence on Twitter during the meeting, encouraging attendees to focus on the individual needs and viewpoints of individuals with autism, not just the ever-discussed 1 in 68 statistic. During a scientific panel on gender differences in autism, two women with autism posed important questions to the panel about identifying and treating autism in girls. Lastly, 2014 INSAR Advocate Award recipient Peter Bell implored researchers to spend time within the autism community, leaving the lab at least once a month to personally engage with individuals with autism.
IMFAR 2014 brought together leaders in the field of autism research and advocacy, allowing for the generation of new ideas and collaborations. But the true benefit of this meeting was the refreshing chance to stand back as a field, assess from where we’ve come and refocus on important issues for the future of autism research.
By Peter Hotez, M.D., Ph.D.
Founding Dean, National School of Tropical Medicine, Texas Children’s Hospital Endowed Chair in Tropical Pediatrics
Today is the seventh annual World Autism Awareness Day, a day when organizations committed to autism research, advocacy, or policy promote awareness through events and public discussions.
As both a scientist and a father of four – one of whom is an adult child with autism (as well as other mental and physical disabilities) and a second who is actually doing her Ph.D. on the developmental psychology of autism – I am often asked to speak or provide public comment about the autism spectrum conditions, especially their causes.
Indeed, the fact that I lead a multidisciplinary team that develops neglected disease vaccines while also serving as President of the non-profit Sabin Vaccine Institute and Texas Children’s Hospital Center for Vaccine Development often places me front and center in the dialogue about purported links between autism and vaccines.
For me, the issue is completely straightforward. From a scientific perspective, there is no scenario where it is even remotely possible that vaccines could cause autism. Instead everything I know both as a parent and as a scientist points to autism as a genetic or epigenetic condition.
A new paper just published in the New England Journal of Medicine by Eric Courchesne and his colleagues at the University of California, San Diego, confirms that the brains of children with autism have distinct patches of architectural disorganization in their prefrontal and temporal cortical tissue. Because the organization of the cortex begins in the second trimester of pregnancy, Dr. Courchesne concludes that the events leading to the malformation of the cortex must begin around this time or perhaps before then, certainly well before a child is born or ever receives a vaccine.
These new findings make a lot of sense. Another term for autism is pervasive developmental disorder (PDD) and indeed I am often struck by how my child’s neurological deficits are indeed pervasive and that there is no plausible way a vaccine injection could cause such profound structural changes to the brain.
Sadly, there are still widely held misconceptions about vaccines and many parents still continue to attempt to withhold or delay urgently needed vaccines for their child. For instance my colleague Anna Dragsbaek, who heads The Immunization Partnership, tells me that each year tens of thousands of children in Texas do not receive their full complement of vaccinesbecause parents opt out due to unwarranted fears of adverse side effects of vaccines.
The results of not vaccinating your child can be devastating, such as in a recent measles outbreak in Tarrant County, Texas, and another one in Orange County, Calif., that were both totally preventable. I like to emphasize that measles is not a benign illness, and can cause pneumonia, ear infections, diarrhea and in severe cases, encephalitis.
My research group works closely with the Institute of Health Metrics and Evaluation at the University of Washington Seattle, which recently published findings indicating that worldwide 125,400 children died from measles in 2010, in addition to 81,400 from pertussis, 61,300 from tetanus, and almost one million from pneumococcal disease. We have safe and effective vaccines for each of these diseases and sadly, most of these deaths could have been prevented!
So on this day I hope to continue to educate the public both about our safe and effective vaccines, while focusing national attention on autism where it belongs, namely the urgent need for research on the autism spectrum disorders.
There are some excellent resources for the latest research on autism as and the lack of a correlation between autism and vaccines, as well as for parents to identify autism early, when intervention is most effective.
Here at Baylor College of Medicine and Texas Children’s Hospital there is some extraordinary work going on in our Department of Genetics and at the Jan and Dan Duncan Neurological Research Institute. Our scientists are making extraordinary discoveries leading to the development of new and innovative interventions to combat autism.
As a parent and a vaccine researcher, it is my hope that we put all available resources towards finding the true causes of autism, while also continuing to fully fund the research of new and emerging vaccines that have already saved millions of lives and will save millions more in the next decade. Both issues are critical to our long-term public health and economic prosperity.
Every adult wants to lead a meaningful life, and individuals with autism spectrum disorders (ASD) are no different. More and more, people with ASD are working, living, and engaging in their communities, and are being recognized for their strengths and talents. Yet the questions still remain: What do young adults with ASD need to transition to being productive members of society whose skills and interests are used and valued? How can professionals, parents, advocates, and others ensure that a place in the world is carved out for these individuals? This conference will present new research and innovative models to spark a dialogue about current challenges and effective solutions to helping adults with ASD obtain and maintain work, social connections, and independence.
ASF Scientific Advisory Board Member David Mandell will be giving the keynote address.
Tune into the Hilibrand Autism Symposium lifestream today from 9:00am to 4:30pm at
The Centers for Disease Control and Prevention (CDC) today reported that 1 in 68 children is diagnosed with an autism spectrum disorder. This new estimate is roughly 30 percent higher than previous estimates reported in 2012 of 1 in 88 children. The number of children identified with ASD ranged from 1 in 175 children in Alabama to 1 in 45 children in New Jersey.
For the full press release, please visit our website.
10:15pm. It’s Friday night, and I have dozed off in a hallway of the Psychology Department at NYU, sitting in a chair across from a sign that says “Sleep Study in Progress – Please Be Quiet!” Behind the sign there is a little room where several Thomas the Tank Engine sheets and pillows mask its position as the waiting room in a research lab. I had just emailed a friend of mine to say that if all goes well, we’ll be finished by midnight.
In the Thomas the Tank Engine room, Dimitra is currently trying to get our son Yanni to sleep. We had just read the ironic news via text message that Yanni’s identical twin brother was sound asleep back at home. Vasili has already been in the Thomas the Tank Engine sleep room twice, and twice he failed to sleep deeply enough for the task that lies ahead for Yanni. That task is to put on earplugs, headphones, various other monitoring wires, turn on his back, and be perfectly still (ideally sound asleep) for up to 45 minutes while inside a noisy MRI machine.
Unlike many autistic children, Yanni and Vasili tend to be good sleepers. What makes me nervous about their ability to sleep in the machine is not the noise or the wires or the strange environment, but the need to lie on their backs. I’m not sure they can do this for five minutes without straining to roll over. I know this because for the past three weeks, we have been training Yanni for the big night. Every night after he goes to sleep, we have played an hour-long CD featuring the loud bleeps and grinding noises of the MRI. We have been making him increasingly uncomfortable for the experience, first with little putty earplugs, then with a cap, and finally with headphones. Yanni usually sleeps through the cacophony, but he almost always winds up on his stomach.
We have signed both of our sons into a study called “Functional Brain Imaging of Low Frequency Oscillations: Relation to Attention and Sensory Integration.” By comparing the brains of autistic children and the brains of neurotypical children, the researchers hope to understand more about the disability. We are excited to be part of this, not just because we are helping to contribute to knowledge, but because we get a thorough evaluation of the boys (not normally covered by insurance), which can be useful when negotiating with school boards.
Our bodies have different ways of marking the passage of time. Breathing and the heartbeat are the most familiar, but there are other ways too. There is also a rhythm to the activity in our brains, which fluctuates on a cycle of between 15 and 30 seconds in duration. I have always found it easier to concentrate while listening to music, and I wonder if music helps regulate this natural neurological rhythm. Our sons, like many autistic children, have difficulty staying focused on non-repetitive activities, and they are highly motivated by music. Sometimes, when they cry from distress, we can put them at ease simply by turning on the radio. The researchers hope to find out if this cycle looks different in the brains of autistic children and children with attention deficit hyperactivity disorder (ADHD). I note that it’s going to be a long night, and I’m helping to pass the time by thinking of a song I recently downloaded.
10:30pm. Dimitra peeks out the door and wakes me up to tell me that Yanni seems to be deeply asleep. We agree that the best way to test this is to call the research scientists in so that they can insert his earplugs. After the first earplug goes in, Yanni rolls over on his own, paving the way for the second earplug. He seems to be pretty out of it. We’re going to make the attempt!
Before we move Yanni, we have to take him out of his sleep-sack. Many babies sleep in these, which are essentially blankets that fit over a child’s shoulders with a zip down the middle. The zipper is metallic, and no metal is allowed in the MRI room. (Earlier, Dimitra and I had to answer a long list of low-probability questions, like whether we have worked as welders or had eye injuries involving metal.) We found a Canadian company that makes sleep-sacks for older children, since there is no way Yanni and Vasili would be able to stay under normal sheets and blankets overnight. The three of us then had to undergo a metal detector wand-examination, like the one you get after you set off the main metal detector in the airport. We passed.
We transfer Yanni to a bed-on-wheels and bring him through what I will call the control room, which overlooks the MRI room, and onward to the MRI itself. Four NYU scientists then grab the sheet under Yanni, count to three, and hoist him onto the table.
At this point, Yanni opens his eyes briefly, but still seems to be asleep. We wait two minutes, five minutes. Then the scientists start fussing around and prepare him for the scan.
11:07pm. It feels like it’s been forever since we brought Yanni into the scanning room. I’m worried that it’s taking too long, that he’s already been on his back too long, that there’s no way he will stay asleep in the scanner. Finally it’s time to try. I feel relief and excitement. After two failures with Vasili, maybe we will actually be out by midnight. Dimitra goes into the control room, and they start to slide Yanni into the scanner. Then, he opens his eyes again. We wait again. The eyes close. Then he stretches. Finally, Yanni starts grabbing at the kind of cage that surrounds his head. There’s no kidding ourselves. He’s awake.
I run to him as the researchers free him from all the wires and headphones. Yanni reaches to me and starts giggling. We go back into the Thomas the Tank Engine room and start again. This time, I bring the chair into the room and fall asleep on it there.
1:30am. We’re back in the MRI room. Yanni is asleep. This time, it’s going faster and smoother. He stays asleep as he goes into the scan. Dimitra and I move to the control room. Anyone who is a parent has the experience of wishing their kids asleep, worried about every little sign that the child might wake up. We experience the hi-tech version of this. A small camera in the MRI machine zooms in on a mirror on the head-cage that surrounds Yanni, reflecting an image of his eye.
Dimitra and I are looking at an extreme close-up of Yanni’s eye. Sure enough, it opens. Yanni doesn’t even look around. He’s probably still asleep. We watch as he slowly blinks until the eye closes again. Collective sigh of relief. Then it opens again, then it closes. We wait. Ok, it’s a go!
The MRI starts up, and Yanni is startled. Will he be able to go back to sleep this time? Our question is quickly answered by a loud and disconcerting alarm. After a microsecond of distress, I realize that this alarm simply means that Yanni is awake and the scan is aborted. I run in again and the researchers remove the head-cage that Yanni is now grasping for.
Yanni mutters something that the lead scientist strains to interpret. Did he say, “I don’t want it!” she asks me. No, I say. Yanni doesn’t have words. In point of fact, he sometimes does say words. Every
few days, he will whisper “cup” if he wants something to drink. He says “Daddy” but only when a therapist shows him pictures of me, not in reference to the actual me. The only time he strings two words together is when he presses his chin against Dimitra’s or my check, or nuzzles us behind the ear, and says “oooh, I love!” It’s incredibly endearing. But even then, I don’t think he knows that this is two words. There is no way he just said, “I don’t want it!” But it is clear he wants out.
We go back to the Thomas room. I abandon the metal chair and decide to sleep at the end of the couch where Dimitra is trying for the third time to get Yanni to sleep. Then something unexpected happens. I hear a door opening. But the front door is locked, and the scientists only come in from the control room after knocking. Someone has a key to the front door.
The door opens just a crack, and my first thought is that it’s an evil henchman from a Bond movie. I see a very tall man with wild, stringy hair, and a pockmarked, unsmiling face. He’s trying to make us out in the darkness. It occurs to me that my wallet, mobile phone, wedding ring, and whatever other valuables are between this figure and us. The door quickly closes, and this will remain a mystery for a little while. What if he opened the door when we weren’t there?
3:43am. This time the scientists knock and come in. They ask whether we are ready yet. As a matter of fact, we are. Dimitra tells them that Yanni is still wearing his earplugs from the last attempt. But when we check, we notice that there is some putty entangled on Yanni’s hair. We try to pull it off, but it won’t move. There’s a real danger we’re going to wake him up over this, so we leave it there. Then we realize that he is already wearing two earplugs, which means that we didn’t notice that this spare one was on his hair the last time. So, we leave it there again. This time, I carry Yanni straight to the scanner, forgetting the bed-on-wheels. Within about a minute, he’s in, and the scan begins. One of the scientists mutters under her breath that this is the way it’s supposed to work.
We’re all in the control room except for the lead scientist, who has her own set of headphones and is with Yanni in case he wakes up. We zoom in on his eye, and this time it’s not moving. For there to be enough data, Yannni needs to be in the scanner for at least eight minutes. One of the scientists signals (through the glass window) as each minute ticks by. Dimitra remains pessimistic. But Yanni blows through eight minutes.
It occurs to me that Yanni is like an explorer. We prepare him, suit him up and send him down a narrow corridor for exploration. Only he can do this. But what he’s exploring is not some cave but the inside of his own head. On a monitor, we can see his entire brain structure. It reminds me of the ultrasounds we saw when he was in the womb. We even get a few printouts for our records or just as keepsakes. Unlike regular explorers, Yanni has no awareness of what he’s doing. He’ll never know that we were looking into the architecture of his brain or that he is contributing to our understanding of what makes autistic people different. For that matter, Yanni doesn’t even know what autism is. He’s just a happy little 6-year-old who is not getting a normal night sleep at the moment.
Yanni stays in the machine for a full 45 minutes. They get every kind of scan they want. By a margin of five minutes we break the record for the latest night the researchers have had to endure in this project. Most kids finish by 1am or so, 3am at the latest. Somehow, we feel we are always the exception!
When it’s over, Yanni is still asleep. He could have done more, if there were anything more to scan. We get him dressed, finally get the three earplugs off of him and start to head home. On the way out, I see that our evil henchman is in fact the security guard. He probably just wondered if we were still there. We get in the car and make the hour drive to our home in the suburbs. On the way, I feel a kind of closure by playing the song that has been echoing in my head all night, and it makes the drive easier. At last, we are home and I get some satisfaction in getting into bed just before 6am, as if that represents some kind of milestone. I set the alarm for 8:15am and go to sleep.