Thanks to college students across the country, Autism Speaks U chapters and students played a key role in many of Autism Speaks’ accomplishments and successes this school year!
Check out the list below to see how students helped support Autism Speaks’ mission to change the future for all who struggle with autism spectrum disorders.
Established 75 official and provisional Autism Speaks U chapters that raise awareness and funds while supporting the local autism community. Click here for a list of chapters.
Supported over 95 Walk Now for Autism Speaks events by volunteering, attending and fundraising. In just 5 months, Autism Speaks U Walk teams have raised over $180,000. Click here to find a Walk near you.
Dr. Herb Pardes on why psychiatry's "bible" needs constant updates with research on the underlying causes of mental disorders
The new edition of psychiatry’s “bible” remains crucial for diagnosis and treatment; but it also needs constant updates with research on the underlying causes of mental disorders
Psychiatrist Herb Pardes, M.D., is the executive vice chairman for the Board of NewYork-Presbyterian Hospital. Previously he served as the hospital’s president and CEO and before that as the director of the National Institute of Mental Health, the president of the American Psychiatric Association and the dean of the Columbia University College of Physicians and Surgeons. Dr. Pardes also serves on the Board of Autism Speaks.
This has been an eventful week for the mental health community. Last Thursday brought the CDC announcement that nearly 20% of children ages 3-17 have a mental health disorder with autism landing near the top of the list. And Saturday saw the long-anticipated publication of the fifth edition the Diagnostic Statistical Manual of Mental Disorders (DSM-5), a tool that has been called psychiatry’s “bible.” Never before has its revision stirred such discussion among patient and provider groups. That concern has been deepened by reports that the director of the National Institute of Mental Health, Tom Insel, M.D., said the manual lacks “validity.”
That’s unfortunate because, in fact, Dr. Insel and others in the field – including me – embrace this manual as providing us with the most up-to-date information on diagnosing and classifying mental disorders. By giving us a common terminology, the DSM helps us pursue the kind of global research needed to transform our understanding of mental disorders. With this and every edition, we’ve also added knowledge that can improve diagnosis and treatment.
Beyond Symptoms; Research on Causes
At the same time, I understand the frustration of families struggling with autism, schizophrenia and many other brain disorders. At present, we can describe these conditions only by their symptoms. We are still struggling to understand their causes.
In fact, each of these conditions may likely result from many different factors, though each likely involve some degree of genetic predisposition. In some cases, two people can have the same gene variation. But only one develops a brain disorder. Or one person with a gene mutation develops autism, and someone with a slightly different variation in the same gene develops schizophrenia. Even individuals with the same diagnosis may have differences in both symptoms and underlying brain circuitry.
Only by understanding and distinguishing the underlying biology of brain disorders can we develop therapies that go beyond reducing symptoms to targeting a cause. Only then can we deliver “personalized medicine.”
This is the crux of what Dr. Insel and others have been arguing: Clusters of behavioral symptoms are helpful for guiding diagnosis. But we need to focus our research on the genetics and other biological factors that cause brain disorders.
Consider the physician of 200 years ago. With great fanfare, she/he might pronounce that you suffer from, say, “fever.” He might even have a treatment to reduce your temperature. Of course, today’s doctors know to look for the root cause of the fever and address it.
Symptom-based diagnosis, once common in many areas of medicine, is being replaced – or at least complemented by – laboratory tests. Under Dr. Insel’s guidance, the NIMH is supporting research aimed at strengthening our diagnostic system for psychiatric conditions.
The Promise of Genomics and Brain Imaging
The good news is that I’ve never been more hopeful that we’re poised to deliver on biomarker-based, personalized medicine for brain disorders. Every year the cost of whole-genome sequencing drops further. Large-scale genomic research is increasingly affordable and genetic testing is becoming a standard part of clinical diagnosis.
Autism Speaks, for example, is collaborating with the Beijing Genome Institute in a historic whole-genome sequencing of 10,000 individuals in families affected by autism. Already, preliminary analysis of the first 200 genomes of this “10K Autism Genome Project” is providing information with clear usefulness in the clinical management of autism. In the future, this wealth of genomic information could guide the development of precision autism and psychiatric disorders medicines based on each individual’s genetic profile.
Beyond genetics, we’re seeing revolutionary advances in noninvasive brain imaging such as MRI and CAT scans. Technologies such as these allow us to look at differences in brain circuitry. As we deepen our understanding of these mechanisms, we will further advance our ability to develop effective, targeted therapies.
And so I join with Dr. Insel in calling for more research on the genetics and biology of brain development. In this way we will find the hidden factors beneath a broad range of brain disorders.
We must also remember that pharmaceutical companies are increasingly on the lookout for more reliable treatment targets. If we in psychiatric research can’t provide them with these targets, then pharmaceutical companies will invest their dollars elsewhere. That would be a tragedy given the prevalence of mental health disorders and their burden on our families and society.
We know that this research can more than pay for itself – by both raising quality of life and function for individuals and reducing costs to our healthcare system and society.
DSM-5 and Beyond
For now, the DSM-5 is the best tool available for clinicians diagnosing and treating mental health conditions. Ten to twenty years from now, however, I envision a DSM edition that outlines diagnosis based on genetic testing, brain scans and other laboratory tests alongside behavioral symptoms.
Like Dr. Insel, I am calling for as much federal funding as possible. I am also tremendously grateful to organizations such as Autism Speaks and the Brain and Behavior Research Foundation whose supporters are finding the money to support this research.
Find out how far Chad has come on the season finale of World of Jenks.
Last night was the season finale of MTV's World of Jenks, and we have to admit... we weren't ready for it to end! But, as the title of the episode explains, 'It's Not Goodbye...' - and we can't be happier!
This season, Chad grow up tremendously, as we watched him have a girlfriend, which came with a first kiss and some Justin Bieber drama. We saw him graduate from his school and enter the workforce, which wasn't the easiest task. One of the biggest transitions Chad made was moving into a new home, which he was totally against, but with Jenk's help, he spent the first night sleeping in his own room since he was four years old. It is an emotional goodbye as Jenks has solidified himeself as a member of the family. As he packs up to go, he says it's, "see you later" and not "goodbye."
On May 16th I had the pleasure of meeting Temple Grandin; you know THE Temple Grandin.
This blog post is by Ali Dyer, the Social Marketing Manager at Autism Speaks.
On May 16th I had the pleasure of meeting Temple Grandin; you know THE Temple Grandin. She agreed to host a live chat with us discussing her new book, The Autistic Brain, and I was thrilled.
I have to say though, I was nervous. As many of you will agree, Temple is among the biggest autism ‘celebrities.’ I admire her in so many ways. She had the drive to be educated and to work in a time when women weren’t always encouraged to do so. Temple also faced many challenges that stemmed from having autism, but rather than retreat and give-in, she faced them head on and had the will to succeed. Like come on, the squeeze machine?!?! Brilliant.
My family and I often find ourselves going back to HBO’s original film Temple Grandin when we talk about my brother. I thought that I understood how Jeff sees the world, but after viewing the film it really came to life for me. I’m no movie critic, but it is a must see!
Temple is one of the best resources the autism community has and to be able to sit side-by-side with her was a total honor. When we finished up, Temple told me that she wanted to come back and do more – I am going to hold her to it!!
Below is our chat transcript
There was a total of 2,857 live readers(WOW!) and has been replayed 2,475 times and counting!!
What does a person say when a lifelong dream is fulfilled?
This post is written by Aaron Likens from St. Louis, Mo. Likens is the author of “Finding Kansas: Decoding the Enigma of Asperger’s Syndrome.” To find out more, check out his blog here.
What does a person say when a lifelong dream is fulfilled? That’s the question I’ve been trying to answer after my experience on Monday at the Indianapolis Motor Speedway.
When I was young, I grew up just a few miles from the Speedway. I had a few drivers I liked, but my true hero was Duane Sweeney who was the flagman. My special interest, or “Kansas” as I like to call it, was the Indy 500 and the flagman who worked it. I’d watch and re-watch the start and finish of the race just so I could see Duane waive the flags.
My dad was a pastor and had a church near the track and one of his members worked at USAC which sanctioned the race at the time. He asked her if she could get me an autograph from Duane. Duane, learning he had a fan, gave me his autograph, but it was on the checkered flag he was going to use for the 1990 Indianapolis 500. My mom has photos of that day but I don’t need any to remember the gigantic grin on my face that day. I waived that flag for hours that day, and many days thereafter, dreaming of a chance to do that at the Speedway for the Indy 500.
Years went by and when we moved to St. Louis I started racing go-karts. At the club I raced at there was this flagman who was around 80 years old and he was starting to lose his vision. I volunteered to become the assistant and I would hand him the right colored flags for him to display. A year later he retired and I became the club’s flagman at the age of 13!
Several years later it looked as if a racing career was going to take off (I had NASCAR or Indycar aspirations) but it didn’t. However, I continued to flag for the local kart club as well as a regional series.
In 2003 I was diagnosed with Asperger’s and, after getting some awful information on the Internet, I wanted to give up. The only thing I looked forward to was the weekends and the time spent with flags in hand working at a racetrack with the dream, still, of someday flagging at Indianapolis.
In 2008 I became the flagman of the world’s largest kart race, The SKUSA SuperNats and in 2010 I became the series flagman for the USAC .25 midget series as well as the SKUSA Pro Tour. Both series had me traveling the country working races and still the dream was the same; Indianapolis.
Last year I filmed a video blog from the flag stand at Indy the day before the Indy 500 and one of the staff there heard my story about flagging, Asperger’s, and the story of my flag and he said, “Aaron, let’s stay in touch because we may just want you to be an honorary starter for one of the days of practice next year.”
We did stay in touch and I got the chance to be an honorary starter this year. It was on Monday and getting to the track that day, well, I’ve never been more nervous to be at a racetrack. I always get chills entering the hallowed grounds of the Indianapolis Motor Speedway, but on Monday I was almost sick to my stomach. I knew I was about to live out a dream and, above all else, I had this constant voice tell me, “don’t drop the flag… don’t drop the flag…”
The noon hour came and I was on the special stand that the honorary starter stands on. A few minutes passed and JR Hildebrand took to the track. It seemed like an hour from the time he left the pits to the time I saw this blur of color and speed exit turn four. I held my breath as I realized just what the next six seconds would mean for me.
I raised the green flag in the air and held it aloft. There’s a picture of this and I have the most serious look on my face, as if I was unhappy, but this is the way I flag. JR neared the finish line and I unleashed the flag in a flurry of movement and JR flashed pass in excess of 200 mph and left in his wake one of the biggest smiles I’ve ever had.
And just like that my duties at the Speedway were done; a lifelong dream was fulfilled. I always had the dream but I never imagined that I would get a chance to be a part of an event I have been obsessed with my entire life.
So I still have to ask, what am I supposed to say, or feel, after doing such a thing? I’m not sure, but perhaps I’m not supposed to say anything. Perhaps it is the smile I displayed after the car flashed by that says it all. That, and the continuing gratitude I have for Duane Sweeney who gave me one of his most cherished possessions that laid the groundwork for myself living a dream.