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Autism in the News – 11.29.11

November 29, 2011 Leave a comment

Head Size Tied to Regressive Autism in Boys (HealthDay News)
Boys with regressive autism have a larger head circumference and bigger brains than other children, a new study finds. Read more.

Technology unlocks doors for learning disabled (Canada)
Lord Roberts was a British military commander of some fame whose picture outstares anyone passing along the hallway of the school bearing his name in Vancouver’s West End. Read more.

Boy’s artistic ability overcomes his Autism (Cleveland, Ohio)
Justin Peterson amazes everybody around him with his artistic abilities. Justin Peterson was born November 8, 1995.  Around the age of three he was diagnosed with PDD-NOS, and had been fully diagnosed at the age of seven with the devastating disease known as Autism. Read more.

College material: More students with autism, learning disabilities and special needs attend campuses in Genesee County (Flint, Mich.)
The cartoon rabbit sporting urban streetwear on Nicholas Pentecost’s sketch pad is a bit of a nonconformist. Read more.

Autistic toddler denied bedroom of his own. (UK)
Autistic toddler Ryan Finney is desperate for his own bedroom. But his parents Kelvin and Lisa have been told there are almost 300 people ahead of them on the waiting list for a three bedroom house. Read more.

Categories: Autism in the News Tags: ,

A Weatherstone Grad Reflects on Entering Autism Research

November 29, 2011 5 comments

Posted by Dennis Weatherstone Pre-Doctoral Fellow Elaine Hsiao

 

Nearly seven years ago, I made the all-important decision to pursue a future in scientific research. I was inspired by the ability of research to humble far-fetched ideas into reality, and I wanted to help uncover knowledge that would serve as an indispensable foundation for the advancement of medicine, technology and industry. Importantly, I saw an opportunity to evoke change in a way that improves lives.

As I enter my fifth year of studying the molecular underpinnings of autism, it is precisely these real-life applications of scientific research that continue to motivate me. I am grateful for the support of Autism Speaks and its numerous donors, in defending the realization that only by pushing the frontiers of science will solutions to today’s most pressing problems be found.

As an Autism Speaks Weatherstone fellow, I have been studying maternal infection as a primary environmental risk factor for autism, under the guidance of neurobiologist Paul Patterson, PhD, at the California Institute of Technology. Using animal models, we are uncovering the biological pathways that implicate infection in the development of core behavioral symptoms of autism as well as associated alterations in brain development. We are further exploring means for effective prevention and treatment, with aims to translate our findings to the identification of potential biomarkers and targets for effective therapies.

Support from the Weatherstone fellowship has also allowed us to explore the potential connections between gastrointestinal (GI) complications, immune dysregulation and behavioral symptoms in animal models for autism. We are very excited that this is now part of a larger collaborative research effort supported by Autism Speaks, with the aim of better understanding gastrointestinal GI and immune dysfunction in certain subsets of persons affected by autism.

In addition to providing financial support for my studies, the Weatherstone fellowship has given me unique opportunities to interact with leading scientists in autism research. I am truly inspired by the breadth and depth of research being conducted by my Weatherstone colleagues and by scientists worldwide. Exchanging ideas with scientists from other laboratories and disciplines greatly informs my own work.

Finally, I am deeply grateful to Autism Speaks and the Weatherstone fellowship for providing unique forums for scientists to interact with individuals and families directly affected by autism. Being able to convey the promises, obstacles and advances of autism research to the community is not only rewarding, but also very constructive. Likewise, my time with these individuals and families—time spent learning about their experiences and needs—drives my desire to conduct autism research that is innovative and informative.

With the valuable training I have received through doctoral research combined with the unique experiences I have gained as a Weatherstone fellow, I feel prepared to pursue a productive career in scientific research, with aims to uncover knowledge that will better our understanding of autism’s causes and lead to the development of more effective tools for its diagnosis and treatment. 

[Editor’s note: Administered by Autism Speaks and funded by the Stavros Niarchos Foundation, the Dennis Weatherstone Predoctoral Fellowship Program encourages the most promising young scientists to choose autism research as their career through funding and direct mentoring by the field’s leading investigators.)

Read more news and perspective on the Autism Speaks science page.

What does an organic Santa Cruz microbrewery have in common with a national big-box chain store like Costco?

November 28, 2011 1 comment

Kate Bemesderfer is the Lead Instructor, at the Coryell Autism Center, Santa Cruz, CA

Santa Cruz Mountain Brewing (SCMB) has earned a solid and well-deserved reputation for being more than just a purveyor of tasty organic microbrews and sustainable brewing practices. Brewery owners Chad Brill and Emily Thomas and their talented staff play a major role in Santa Cruz, California community-building. They have high standards, open hearts, and a creative, collaborative approach to just about everything they do. So it is fitting that, on top of everything else they do, SCMB is proving itself to be a valuable ally to the disability community by partnering with Coryell Autism Center to provide job opportunities for our students with autism.

When we approached Chad & Emily about offering an internship to Hunter, they took him in and treated him like one of their own, giving him real work and real compensation from the beginning.  No one at SCMB had much familiarity with autism or developmental disabilities, and the learning curve has at times been sharp.  Like anyone, Hunter has the occasional bad day at work, which means that his coworkers have seen him at his most difficult.  That’s why it’s been so impressive to see the staff of SCMB continue to accept and encourage Hunter to be his best.  It turns out that he has the same effect on them.  As Nicole Beatie, who handles Sales & Distribution for SCMB, puts it, “He’s not really different from any of us. He just needs a little more guidance than some, and probably less than others.  Everyone here has been patient and understanding with him, and that has made me feel good about the other folks I work with, too.”

After six months on the job, Hunter is a valued part of the SCMB team, and it’s a team that Hunter likes being on.  Every bottle of beer the brewery produces is hand-labeled by Hunter, who has learned not only to handle the labeling by himself, but to keep track of the inventory, and to set up the tap room and patio in time for opening. He works at the same rate as anyone else (sometimes faster).  He troubleshoots when supplies are missing, mislaid, or malfunctioning.  He keeps track of his work, noticing and correcting errors.  And he interacts both socially and professionally with the brewery staff, becoming an active part of his own community.  With Hunter’s help, the brewery has been getting bigger.  As the brewery continues to expand, so, too, do Hunter’s opportunities.  It’s a lot of work to keep up with the growing demand, so when the opportunity to increase distribution came to the brewery, Chad and Emily came to Hunter.

Not only is SCMB gearing up to open a second pub in Felton, but they’ve recently contracted with Costco—another of Hunter’s favorite places—to create 6-pack gift boxes of their most popular brews. Once the beer is in the bottles and the bottles are in the warehouse, the job of filling the Costco order falls primarily to Hunter.  SCMB has moved their post-production and storage from the small garage where Hunter started to a much larger warehouse a little farther down the road, so he rides his bike to work instead of walking.  Now, labeling bottles is just the first step in a process that involves taping together gift boxes, filling them with the bottles, sealing them with a hot glue gun, and organizing the finished product on a pallet, all while maintaining a retail-worthy aesthetic.  Hunter takes pride in getting it done right and making it look good.  It’s hard work, but it pays off—literally.  Hunter receives both a WorkAbility paycheck and trade from the brewery.  His favorite part of his shift comes at the end, when he returns to the pub for a nice frosty pint…of root beer!

For more information about Coryell Autism Center visit: www.CoryellAutismCenter.org

Autism in the News – 11.28.11

November 28, 2011 Leave a comment

Using Skin-Cell Research to Probe Cellular Basis of Autism (Psych Central)
Emerging research has advanced knowledge of autism by studying brainlike spheres grown in an elaborate process from skin cells. Read more.

Autism Memoir Author Monica Holloway to Perform in “Spark Off Rose” Performance 12/5 (Los Angeles, Calif.)
Acclaimed author Monica Holloway will deliver a spoken word performance on “justice” at the Spark Off Rose, a monthly spoken word series, at Theater Palisades, 941 Temescal Canyon Rd, Pacific Palisades in Los Angeles, CA on Monday, December 5 at 7:30 p.m. Read more.

Families push for autism funds (The StarPheonix)
Levi Tetlock is a nine-year-old boy who likes playing with toy planes, watching films and eating popcorn. He’s skinny for his age and his thick-lashed brown eyes are usually focused on the wall, small clues to the fact he has autism. Read more.

Two Opposing Brain Malfunctions Cause Two Autism-related Disorders (Medical News Today)
Although several disorders with autism-like symptoms, such as the rare Fragile X syndrome can be traced to a single specific mutation, the majority of autism spectrum disorder (ASD) incidents, however, are caused by several genetic mutations. MIT neuroscientist, Mark Bear, discovered a few years ago that this mutation results in an overproduction of proteins found in brain synapses. Read more.

Teens with autism often socially isolated (St. Louis, Mo.)
Teens with autism face major obstacles to social life outside of school, according to a new study that emphasizes the danger of limited peer relationships and the importance of group activities. Read more.

Categories: Autism in the News Tags: ,

Get College Students Involved with Autism Speaks U!

November 28, 2011 5 comments

Are you a college student? Do you want to raise awareness about autism while gaining volunteer hours and experience for your resume? If so, join our team at Autism Speaks U to recruit students on your campus to host events benefiting our cause and to start a collegiate chapter. Become a Campus Ambassador at any college! You do not have to be close to an Autism Speaks office. It requires a time commitment of 3-5 hours per week for 3 months during the school year.

Watch our video below and click here for more information.

Autism Speaks U is a program designed to support college students in their awareness, advocacy and fundraising efforts. If you are interested in raising awareness on your college campus, visit www.AutismSpeaks.org/U.

Diagnosing Psychiatrists: Making Doctors Work for You

November 28, 2011 11 comments

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.

Since my early adolescent years I have been a reluctant guinea pig for the psychiatric industry. I have been repeatedly misdiagnosed, overmedicated, poked and prodded. I’ve had Bipolar Disorder, Generalized Anxiety Disorder, Major Depressive Disorder, etc… I’ve been on every sedative, stimulant, anti-psychotic and anti-depressant on the market. I’ve endured unbearable side-effects and withdrawal symptoms. I’ve taken drugs to treat the side-effects of drugs that I was taking to treat the side-effects of other drugs! More than once, I’ve wanted to beat a shrink to a bloody pulp, but was too comatose to do so. After a few years of seeing these quacks, I went from an admittedly eccentric kid to the drooling, incoherent lovechild of Charlie Sheen and Anna Nicole Smith.

How exactly did this happen? How did one doctor after another diagnose me with such a wide variety of mental illnesses? Several decades ago a diagnosis of Bipolar Disorder, then called Manic-Depression, typically resulted in commitment to an institution. Now Bipolar Disorder is often nothing more than a trendy label, worn with pride by actors, artists and the like… ” I’m into sculpture and Kabbalah, I smoke American Spirits and I’m Bipolar.” Give me a break!

I was once seeing a psychiatrist who eyed me suspiciously for signs of mania during my every visit. I finally asked him, “How many times do you have to see me before you realize I’m always like this?”

“Well,” he said, “Maybe you’re the kind of bipolar patient who is always manic and never depressed.”

“Are you saying I’m unipolar? Is that actually a diagnosis? Maybe I’m just hyper…”

As many of you know, I’m autistic. This diagnosis is unquestionably valid and has radically altered the course of my life and the way I view myself. How did I go through a decade of constant psychiatric treatment without anyone catching on? Well, for starters, there are a limited few pharmaceuticals approved for the treatment of autism.. There are literally dozens of medications used to treat the symptoms of Bipolar Disorder. You do the math…

This rampant tendency towards over diagnosis belittles the struggles of people who actually have these disorders, and instead of treating symptoms, often creates them in individuals given extremely powerful and dangerous drugs without due cause. I never had an anxiety disorder until I became dependent on anti-anxiety meds called benzodiazepines, which were originally prescribed to me to treat the agonizing side-effects of an anti-psychotic. I guarantee that anyone prescribed escalating doses of sedatives will develop some major issues. But the more issues you have, the more issues you will seek treatment for. The psychiatric industry doesn’t stand to make much money from a patient without psychological complaints.

An equal but opposite problem is caused when perfectly valid treatments are withheld from patients for irrational reasons.  Most doctors receive the majority of their pharmaceutical knowledge from representatives of the pharmaceutical companies. Also, many doctors receive kickbacks from big pharma for prescribing their meds. Because of this, tried and true treatment options are passed over in favor of “the next big thing.” However, these new pharmaceuticals have not yet been proven to be any more effective than their more affordable predecessors, if, indeed, they are any different at all.  The pharmaceutical industry is a lot like Hollywood; the latest blockbuster is usually just a sequel or remake. Drugs that have worked for decades are often tweaked, reformulated, renamed and presented to the public as something revolutionary (this is the case with a myriad of extended release medications, whose instant release counterparts are often just as effective for a fraction of the cost).

When seeing a shrink, it is important to check out the office swag; if the clock on the wall, the paperweight on the desk, and the pen in the doctor’s hand are all labeled with the name of a certain drug, chances are you will find that name on you prescription. Sadly enough, that doctor probably found the same name on their ticket for an Alaskan cruise.

If you find any of this alarming, you probably haven’t been lobotomized by the psychiatric industry or are currently too overmedicated and uniformed to know the difference. If you are seeing a psychiatrist or plan to do so, please, save yourself money and heartache; do your research! No one should go through the hellish and unnecessary experience that I did. Are you sure your diagnosis is correct? Are you taking the most effective, affordable, and time-tested medications?

Ask plenty of questions. Make suggestions. No patient should ever be afraid of their doctor. Remember, your doctor works for you!

I am by no means an opponent of pharmaceutical intervention, and have received enormous benefit from the right medications.  Unfortunately, the road to psychotropic success was unnecessarily long and painful.

It seems the psychiatric industry suffers from some nasty symptoms, including reckless disregard for the safety of others, lying, lack of remorse, and consistent irresponsibility.  According to the DSM-IV, these symptoms indicate a diagnosis of Antisocial Personality Disorder.  Now, I’m not a doctor (I just play one in real life) so I can only suggest that the psychiatric industry be given a diagnosis of APD and prescribed…  a dose of their own medicine.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Understanding… The bigger picture

November 26, 2011 10 comments

This post is by Stuart Duncan, a work from home father and whose wife is a stay at home mother with Fibromyalgia, which adds a whole other layer of difficulty. They devote as much time to their children as possible because they feel that their children need love, guidance and support far more than they need a new shiny bike. They can’t provide all that they wish that they could but their family is what it is, they push forward as best they can. You can read the original post here.

For the last couple of years, I’ve really been pushing the idea of taking awareness of Autism and upgrading it to understanding and acceptance. I truly believe that, while awareness is a great start, it’s simply not enough in that, being aware of something doesn’t necessarily mean you understand it. And what most autistics need is some level of understanding and, of course, acceptance of who they are.

Understanding of…

The thing is, you don’t have to necessarily understand every nuance about Autism… it would be nice. If everyone just instantly knew all about Autism, acceptance would be a breeze. But you don’t have to.

What you do have to understand is that there is a reason.

When you see someone acting strangely on the street corner, when you see someone being mean and rude in general, when you see someone hitting themself, when you see a person being… not what you expect… there is a reason.

Perhaps the person has a disability/special need, perhaps the person had a really bad day (fired, family member died, lost everything), perhaps the person simply is the way they are… it is not personal. It’s nothing against you.

All you need to do is understand that there is a reason. Rather than say “that person is weird” or to think about how what they’re doing affects you… instead, ask yourself what the reason could be. Perhaps it’s bigger than you think. Perhaps it’s not. But there is a reason.

It’s not always Autism… so it’s not just for autistics that I push for understanding.

But I do know this. If people stop judging and take a moment for greater understanding when they see an autistic acting “against the norm”… then perhaps those people will take a moment for greater understanding in all circumstances.

Don’t let someone lashing out at you affect your day. They had a reason and it wasn’t you. Don’t let someone acting strangely affect how you see people. They have a reason… they’re not strange.

Greater understanding… it starts when you stop taking it personally and judging the person for it.

Acceptance

With understanding comes acceptance… once you come to understand how a person is, how they think and who they are… you accept them.  You may wish to avoid the person who lashes out at strangers when they have a bad day, but you accept them for that.

Same with people with special needs, or even just regular every day people who go about their life differently than you do.

They have a reason for being who they are just as much as you have a reason for being who you are. And if you understand that, you can accept that.

I want for people to accept me for who I am just as much as I want for people to accept my children for who they are. Not because one has Autism and not because one does not. But because they are who they are.

Just One

If you can gain understanding and acceptance for just one new person, someone you see as different than yourself, someone you do not yet know… then you can do it for anyone and everyone.

It doesn’t matter if it’s Autism, Tourettes, Down Syndrome, political differences, religious differences… anything! If you can gain greater understanding and acceptance of anyone… you have the tools necessary to do that for everyone.

Be quick to to understand…. not judge.

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