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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.

A Father’s Day Celebration: Members Only

November 25, 2011 11 comments
Lou is a married father of three children. His oldest daughter was diagnosed as having Autism Spectrum Disorder at the age of 4. You can read the original post here.
For this post, I would like to pay tribute and thank all the fathers out there that love their autistic children unconditionally. This is for the dads that have what it takes to be a real man and stand by your family and take your vows seriously. This is for the dads that don’t run from their child being different, and for those that may just now be coming to the realization that they are entering a club that they had no plans on joining.
For many in a marriage, an autism diagnosis can be placed in the “worse” column of “for better or for worse”, but with patience and communication you can survive. Don’t bottle up your fears. Tell your wife, your friends, or share them with others in a blog and you will free yourself of the many burdens you are trying to shoulder and find strength in numbers.
You know that you are the father of an autistic child when:
  •  You know exactly what your child is saying even though she has never said it… EVER.
  • You go to visit your friends who have children and they apologize for how their kids are behaving, yet you never even noticed.
  • You have ever worn more of your child’s food then he has eaten, and he is 6.
  • You have ever tried “stimming” just to see what it is all about.
  • Using just your peripheral vision, you can snag crayons from your child’s hand before they go in the mouth.
  • You see a kid being a complete terror at the grocery store and you do not judge.
  • You have been punched in the face by your child and instead of getting angry, you laugh it off.
  • Your child saying, “I love you” even if by echolalia makes you feel like you are the king of the world.
  • You have eaten a family dinner in the dark on several occasions.
  • You have shared belly laughs with a child that you have no reason as to why they are laughing.
  • You have been given every crackpot theory about what causes autism and what will make your child better, and have kept yourself from going insane.
Got any more out there? Go ahead and lay them on me!
Join in the fun and let’s celebrate! You guys deserve it!

How does research help my child today?

November 25, 2011 3 comments


 Today’s “Got Questions?” reply comes from Rebecca Fehlig, Autism Speaks national director of field and chapter development

I still remember the day in 2009 when I was sitting in the committee hearing room of our state capitol. We were waiting for the next parent to testify in favor of our Autism Insurance Reform bill—in its second year of battle here in Missouri. Many moms and dads sat in the back with me, clutching their note cards, printed testimonials and handwritten pages. Though we were all nervous, we were eager to tell our stories to the legislators whose decision could make such a huge difference in our children’s lives.

Megan was a local volunteer, autism advocate and parent of two children, one of whom (Henry) has autism. Her hands were shaking a little, but she delivered her message in a calm and confident voice. She was confident the legislators would respond to her personal testimony. Megan explained that she was in extreme debt, had declared bankruptcy and had to sell her home—all to pay for Henry’s autism behavioral treatment. But Megan was not there to complain. She wanted to share Henry’s progress and positive outcomes. Thanks to more than 20 hours a week of early behavioral intervention, Henry had uttered his first words. She told the legislators that her financial sacrifices were well worth that precious reward. But she asked that other families not have to sell their homes and declare bankruptcy for their children to receive treatment for autism. I was not the only one wiping tears at the end of her story.

But the next individual who testified opposed our Autism Insurance Bill. He represented an insurance provider, and he used the same argument that insurance lobbyists were feeding the legislators across the country. “Although we empathize with Megan’s struggle,” he said, “the simple fact is that behavioral therapy is an experimental treatment for autism.” He said it was reckless for insurance providers to pay for experimental therapies and that despite Henry’s improvement, there was no predicting whether other children would benefit.

His words produced gasps around the room. My heart sank.

But wait, this is where the story gets good. Next, Lorri Unumb, Autism Speaks vice president for state government affairs, took the stand. She too shared the progress of her son from intensive applied behavioral analysis (ABA). But it was the next part of her testimonial that every legislator in the room heard loud and clear.

Countering the insurance industry testimony head-on, Lorri stated unequivocally, “ABA is not experimental!” And she had the published research studies to back up her statement.

It didn’t matter whether the studies were done in Missouri or another state. Each study had been vetted and published by a leading scientific journal. The evidence made clear that ABA is far from experimental, and it demonstrated the importance of early intervention in producing the most successful outcomes.

The Missouri House of Representatives voted our bill out of committee that day. It went on to our governor’s desk to be signed into law—all because we had the scientific research to back up our efforts.

Never before had the importance of funding research become so clear to me!

Currently Autism Speaks is funding additional studies that can provide a firm foundation for our advocating that insurers cover additional types of behavioral therapy–such as social skills training, infant-toddler interventions and cognitive behavioral therapies focused on social and communication skills.

And that’s crucial because the downside to our story was that the Missouri bill mandated coverage for some but not all autism treatments. Many more treatment options need to be further investigated to ensure they are safe and produce tangible benefits for those who struggle with autism.

The great news is that Autism Speaks just funded $1.8 million in treatment grants that will further our understanding of the most promising new interventions—not only for children but for all those on the spectrum—from early intervention therapies in underserved communities to job interview training for adults.

We look to these studies to give us the ammunition we’ll need the next time we are sitting in front of a room full of government decision makers. And they would not be possible without your support at our Walks and other fundraisers.

When it comes to helping our children and all those with autism, scientific evidence of benefit puts us on the road to affordable access to therapy. And that means better outcomes. This is what our families deserve and our mission supports.

Autism Speaks continues to work for state-mandated medical coverage for autism interventions. To date, its advocacy efforts have helped secure autism insurance reform laws in 29 states. To learn more about Autism Speaks advocacy efforts, please visit http://www.autismvotes.org.

For more news and perspective, please visit the Autism Speaks science page.

Be Aware – For Parents

November 24, 2011 7 comments

This post is by Tim, a freelance writer and designer who works for Myself, a business that has been thumbing its nose at The Man for six years now. He’s both a stay-at-home (sounds better than ‘kept man’) and a work-at-home-and-anywhere-else-I-can-get-away-with-it dad. You can read the original post here.

[This is Part III of today's three-part series, along with Be Aware - For Family and Friends and Be Aware - For Everyone, for World Autism Awareness Day.]

Be aware that you are not alone. Be aware that there are entire communities of us – locally, online, everywhere – joining together for solidarity, support, and advocacy.

Be aware that we’ve got each other’s backs.

Be aware that not only is grief a normal part of this, it is required. Give yourself permission to go through it.

Be aware that your child is the same precious soul as the newborn baby you once held.

Be aware that some days you’ll feel like you can’t do it, but you will.

Be aware that we’re now free from being average, and are instead free to kick butt.

Be aware that autism allows amazing gifts to be expressed that otherwise would not be.

Be aware that your child will achieve something after trying so hard for so long, and you’ll feel like you all won the World Series. Be aware that this will happen regularly, and often when you least expect it.

Be aware that some days you will float on air and feel like anything is possible.

Be aware that often it is also a desperate marathon. It can feel like 26.2 miles over and over again, and you’re wearing six layers of drenched corduroy, while carrying a dump truck on your back.

Be aware that you only have to go one step at a time.

Be aware that being angry or afraid or frustrated or burned out or desperate is completely normal. If you feel completely crazy, be aware that someone else is too; it’s only when you either feel sane or feel nothing that you might want to worry.

Be aware of words like hope, advocacy, determination, community, faith, love, and perseverance, and don’t forget them.

Be aware that one thing unites us and transcends everything we disagree on – the children we love.

Be aware that there are people preying on our fears and becoming rich off of that. Be aware that there’s a special place for them, and it’s not a particularly nice one.

Be aware that autism is never the same from day to day or person to person.

Be aware that our children grow into adults and that we must fight for the rights of all.

Be aware that autism will lead you to some of the kindest, most skilled, and compassionate people in the world.

Be aware that by accepting the challenges you will experience an even greater joy when they are overcome.

Be aware that life can feel like a constant fight against somebody or something; be aware for whom you are fighting and draw strength from that.

Be aware that everyone we meet is fighting a great battle in their lives, regardless of who they or their children are. Be gracious, and model that for your kids.

Be aware that the sun does come up every morning.

Be aware that you are stronger than you think you are.

Be aware that some days all you can do is just roll up your sleeves, hike up your big boy or girl pants, and dive in.

Be aware that love is always the best therapy.

Be aware that you should never say never.

And be aware that I wouldn’t trade my life for anything.

Autism in the News – 11.23.11

November 23, 2011 Leave a comment

Where Invisible Robots Rule (Atlantic City Weekly)
In Frank Quigley’s world, an Invisible robot protects us all. His arch nemesis, Rock Man, is constantly threatening the world. It’s what super villains do. Read more.

Photography program aids developmentally (St. Louis Today)
A program in the St. Louis area is offering proof that those with development disabilities can make meaningful contributions and showcase talents just like anyone else. Read more.

Welcome back, Wayne Cotter (Cleveland Jewish News)
Wayne Cotter may have an engineering degree, but these days when he works, he sharpens his wit instead of his pencils. Read more.

Single mom seeking bright holiday for kids (The Daily Herald)
An unemployed, single mother in Columbia is trying to raise two sons on child support and food stamps. With the local jobless rate hovering above 12 percent, her story might not be that unusual. Except for this: Her youngest boy, 9, has a rare auto-immune condition. He must get nourishment through a feeding tube. He also struggles with autism. Read more.

New ‘breathtaking’ studios unveiled at Muswell Hill school (Haringey Independent)
Pupils at an specialist school for young people with autism have been given a helping hand into the world of work thanks to new facilities unveiled yesterday. Read more.


Categories: Autism in the News Tags: ,

Collapse of ‘Super Committee’ Could Trigger Major Cuts to Disability, Autism Programs

November 23, 2011 2 comments

The collapse this week of the Congressional “Supercommittee” to come up with a deficit reduction plan could lead to automatic cuts in the federal budget totaling at least $1.2 trillion over 10 years. Unless Congress acts, the cuts will begin to take effect in January 2013.  Medicaid and Social Security will not be cut, but autism activities at the National Institutes of Health, the Centers for Disease Control and Prevention, and the Health Resources and Services Administration could be cut by as much as 9.3 percent.

Autism Speaks is a member of the Consortium for Citizens with Disabilities, which released the following statement on the deadlock of the Super Committee from Donna Meltzer, CCD Board Chair:

The Consortium for Citizens with Disabilities (CCD), a coalition of approximately 100 national disability organizations, shares its disappointment today that the Joint Select Committee on Deficit Reduction has failed to come up with a deficit reduction package that addresses the nation’s debt in a manner that is balanced and fair.  While the CCD is very pleased that members of the Super Committee worked to protect entitlement programs that are critically necessary for people with disabilities such as Medicaid and Social Security, the failure to complete a comprehensive package leaves consortium member organizations very concerned about how sequestration will impact the nation’s 54 million Americans who live with disabilities and their families.

CCD knows that people with disabilities and their families depend on a safety net of programs that include both entitlement and discretionary spending.  Because the Committee was unable to enact a thoughtful, balanced and collaboratively developed deficit reduction package, we now face devastating mandatory cuts to many critical programs serving people with disabilities in sequestration. The nation’s budget cannot be balanced on the backs of those with disabilities and chronic health conditions.

A new report released this month by the Census Bureau shows that 49.1 million Americans are poor.  People with developmental and other disabilities, who continue to face the highest unemployment rates, are overrepresented in that number.   Especially in times of a weak economy and high unemployment rates, programs that support people with disabilities – such as supported employment, family supports, food stamps, Medicaid and other community based supports and services – must continue and be protected from across-the-board budget cuts.

CCD urges the Congress to work in a bipartisan manner to enact balanced reforms while investing in its most valued resource – the American people.

The Consortium for Citizens with Disabilities is a coalition of approximately 100 national disability organizations working together to advocate for national public policy that ensures the self-determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society.

I Wish

November 23, 2011 11 comments

This post is by Luau, who writes at Run Luau Run. He is the father of two beautiful daughters, Katie and Brooke. Brooke has autism. You can read the original post of, ‘I Wish,’ here.

After my run this morning, like any obsessed runner I went over to the computer, before showering, to upload my run data.  As my stats wirelessly uploaded from my new toy (the Garmin 610), I manually entered my run into dailymile and then meandered over to Facebook to see what my far-flung friends were up to.  I can across some pictures of a dear friend who had recently taken a trip with her family to North Carolina.  Though we have not seen each other in what has to be over a decade, I have always felt a certain closeness to her and her husband.  Simply put, they are good people.

As I scanned through her album, I got lost in the joy and apparent ease their children and her husband’s brother’s children had with each other.  It seemed so…easy.  I have to admit that there is a part of me that is jealous of what they have.

Don’t get me wrong, I wouldn’t trade Brooke for anything, and quite honestly, if someone walked up to me right now and offered me a pill that would “cure” her autism, I’m not sure what it is I would do.  That being said, I wish it was easier for her.  I wish that social interaction and connection were not something that she just doesn’t quite get.  I wish that Katie didn’t have to feel embarrassed when Brooke made awkward social bids.  I wish that I didn’t have the mindset that I have to anticipate some of those awkward bids and feel the need to cut them off at the pass.  I wish, I wish, I wish…

Everybody has issues.  Everybody has problems.  I listen to the local moms complain about this and that.  Some of them feel silly to me, but the truth is, their problems are real to them.  Everybody has issues.  Everybody has problems.

Ours are just different.

I just sometimes wish they weren’t.

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