Autism Research: Causes and Treatment
Wednesday, July 22nd, 2009
By: Maiken Scott
mscott@whyy.org
The National Institutes of Health projects that funding for autism research will rise in the coming year by $19 million, more than 13 percent. Advocacy groups like Autism Speaks have also committed millions in new research funding. The Delaware Valley is home to several new autism centers. Are scientists coming closer to making important discoveries? In the second of a two-part report, Maiken Scott of WHYY's behavioral health desk explores the state of autism research.
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The autism community uses a puzzle piece as their logo. And to scientists, this developmental disorder that affects people in a broad spectrum of ways certainly seems like an intricate puzzle. One they are solving one tiny piece at a time
Bob Schultz, directs the new Center for Autism Research at the Children's Hospital of Philadelphia:
Schultz: It really could be dozens and dozens if not hundreds of separate factors that cause autism, and that those factors combine in unique ways for each child. So any two children behaviorally will share similarities, and at the causal level they also share similarities, but maybe not the exact set, the exact combination of factors
Schultz says understanding the disorder's causes has to be a research priority:
Schultz: It's kind of hard to fix something if you don't know in what way things initially were broken. And so it only makes sense to focus on how things were broken in order to develop better treatments.
Autism is diagnosed far more often than it used to be. In the 1990s, the official estimates were 1 in 1000. Today, the number is 1 in 150. David Mandell, associate director of the autism center at CHOP, says about 80 percent of this increase is due to better diagnostic tools.
Mandell: There is still some part of that increase that's due to something we don't understand. Chances are it's something environmental. Now every study we have done, suggests that there is no association between vaccines, which is the big environmental thing that people are worried about, and autism. what we are looking at is probably some gene environment interaction.
Scientists at the children's hospital of Philadelphia are focusing on genetic causes, and recently discovered several gene mutations linked to autism. David Mandell says this kind of research could provide clues why therapies and interventions don't work for some children.
Mandell: How do the brains of these children look different than the brains of children who are responding to treatment? how do their genes look different?
Mandell works closely with the school district of Philadelphia. That's an important step says Dr. Michelle Rowe, who heads the new Kinney Center for Autism Education and Support at St. Joseph's University:
Rowe: We should definitely be tracking school age children to see which therapies, since kids spend most of their time at school, looking at those therapies and tracking that through research would be helpful for future generations.
New Jersey just designated six Autism Clinical Enhancement Centers. The state has the highest autism incidence in the nation. Child Neurologist Dr. Mark Mintz heads one of these centers in Voorhees:
Mintz: There's a need to provide support, and particularly a need to understand the disorder a lot better and to identify it at an earlier time, earlier identification will lead to earlier treatment, earlier treatment leads to better outcomes and better quality of life.
Right now, the average age of diagnosis is between 5 and 6 years old – and early interventions should start in the first years of life.
In addition, David Mandell sees a worrisome disconnect between research and practice:
Mandell: There are all sorts of interventions out there, and parents are calling us and saying what is the evidence, and what do you think is an appropriate intervention, and we can't tell them. The second part of that is what we know is much greater than what we do. and so we know a lot about what interventions should look like but if you go into the community and look at practice, it doesn't look like the standard of care.
Michelle Rowe says the Kinney Center at St. Joe's will try to bridge that gap through training therapists, teachers and families. Rowe says researchers and therapists have to keep the ultimate goal in mind:
Rowe: Everyone has an opportunity to do the best that they can, and we need to provide those same kinds of opportunities for individuals with autism.
Autism is a life long disorder. There is also an epidemic of children misdiagnosed with autism who really have things like "fetal alcohol syndrome" or "fragile x" or "laundau kleffner syndrome (Jenny mccarthy's son), "adhd" or "aspergers" or "PDD" that aren't truly autistic, so it's important to separate the non-autistics with the truly autistics, or we will FOREVER be spinning in a cirlce of confusion when it comes to research and treatment of authentic true autism. See cdfoakley channel on youtube for a look at what is probably the most authentic look at true SEVERE autsim seen on internet. Of course, there are other higher functioning autistics, but this channel gives researchers an insight into what severe to PROFOUND autism looks like. Very important. Extremely educational. And don't forget cases like Donna Williams, the alleged "high functioning autistic" who for years wrote books about her HF autism, but now has recently been diagnosed with multiple personality disorder or Dissociative Identity Disorder Google: "blog.donnawilliams.net/…/losing-time-dissociative-identity-disorder-and-the-real-time-travellers" We have to be very CAREFUL who we call autistic and who we call other things, because it seems AUTISM has become a very popular label assigned to NON autistics, which actually HURTS the truly autistic population. Be careful. Know what autism is, and what it is NOT. Jenny McCarthy's son was said to NEVER have had autism, but Landau Kleffner Syndrome. So be careful.
Thank you so much for this report. As a parent of a child with Autism, I can tell you how critically important early diagnosis is. We were flagged about our child's speech development at age 2 and knew he was on the spectrum before age 3. There are those that would call him "cured" or "recovered" now because of the amazing progress he has made, but that progress has come from very hard work over a period of years, from a very young age. It's important to note however that not all children with autism have speech and language difficulty, and therefore parents may think their child is just tempermental or fussy, overlooking what may be signs of autism. It's also very important to note that facing the possibility of this diagnosis is positively terrifying, and that many parents lack the emotional fortitude to face it and get help early. There is support out there and we need to make sure families are made aware of this at the time of evaluations. Being told your child should be evaluated is heart wrenching, getting a diagnosis is heart wrenching, but waiting for your kid to outgrow behaviors, getting a late diagnosis and being required to care for them more intensively throughout their lives is far, far worse. I'm sorry to say I see this happen over and over again, and this is what is particularly heart wrenching to me- it doesn't need to be as hard as some parents make it. They need to know it won't always be as hard as it is in the beginning.