By Kim Stagliano

Quick update on my oldest daughter's first week in her adult autism day program.  The future I worried about is here. And guess what?  Although it's very early, I'm not as terrified as I thought. Dare I say we have:

Relief!

Success!

Happiness!

Our team has worked really hard to welcome Mia to her new routine.  The program is part of a large organization here in Fairfield County, CT.  They offer over 40 "day programs," and Mia will be in two. One is arts based the other, her core program, is called "INSPIRE."  Mia calls it, "InSPIDER." We love that.

We've had excellent communication. Texts. Emails. Notes.

The transportation office has be patient with me.

And Mia seems to be happy.  Today, she is delivering Meals on Wheels in the area. I love that.

More soon!

By Kim Stagliano

From time to time when I'm not too grumpy or tired or busy with mastering adult skills, I'll be writing about autism and aging out. My oldest finished school earlier this month. Forever. She turns 22 in December.
1) By high school, ditch the data clicker. I mean it. Reams of graphs and charts detailing how many times your child tore a piece of paper (Ugh! Destruction!) or slapped her hand on the desk (Ugh! Aggression!) will not help the next group of providers. At all.

2) Ask the paras to step back. Literally. Let your child learn how to walk on his or her own in the hallways without a para at his or her arm. Eyes on arms length should be ample. We changed classes 3 minutes before the bell when one of my kids was having issues with pinching other kids in the halls. Many adult programs have a 5 - 1 or  3 - 1 ratio. Your child will have to learn to be somewhat independent. Scary, yes?

3) Ease way off the prompts the way you ease off the gas on a curvy exit ramp. A prompt dependent adult will have a hard time keeping up in a program that is not prompt based. No programs are prompt based at this time.  Well, very few. 

4) Programs that claim to be for special needs "including autism" likely are not. At. All. Just like we have schools devoted entirely to autism, we are going to need adult programs for job training, mentoring, dayhab, EVERYthing tailored to autism.

A local program that I will call Durmstrang Special Needs Program was stymied by my daughter's minor behaviors.  I mean what on earth would they do with a young woman who sits DOWN on the floor and will not get UP when told under stress?" Imaging the horror!  How could they possibly manage having to come up with coping strategies and a behavior plan to assist her in this huge transition. How about doing your job as a special needs center that claims to include autism with the $49,000 the State of Connecticut was ready to spend with you? 

I know for a fact they have already tossed one young man with autism for his behavior.   "I see no indication that Mia can work within a group," said the director to my team. Ouch.  It's true, Mia had a behavior this year. The Sit In. 

Programs want the shiny, happy disabled!  (You know I mean no disrespect to my friends who have kids with other serious diagnoses so don't snark on me.)  The "Mayor" (this is how one young man was described to me at the Durmstrang Special Needs Program) who can speak and smiles at you and maybe stands a bit too close but is a social delight. Heck, I loved the guy when I met him.  I only wish Mia had his social ability. Alas, autism is not the Mayor. Autism might not look at you at all, let alone smile. But autism hears you, sees your judgemental looks. Autism, like KMart, sucks to many programs.

Oh yeah, even among misfits we're misfits! Cue the elf song and let's build some toys.

Check out every program in  your area where you think your child might be headed by the time your your child is in 10th grade. And then spend the next years working with your school team to prepare your child.

More later. Mia starts her program Friday or early next week. I'll keep you posted.

Pass the Skittletini.... make it a double. Wait, make that a triple. Gianna and Bella are next.

NOTE: I encourage you to read this book by my friend Susan Senator - from Skyhorse Publishing - for ideas on how other families are tackling adulthood for kids at all ranges of the spectrum and with stories from adults who themselves are on the spectrum. Autism Adulthood by Susan Senator

Kim Stagliano is a never-you-mind year old woman with three children on the autism spectrum. She is high functioning in many areas, although many routine tasks of daily living continue to elude her including: privacy within her own home, lack of constant worrying, cash flow competency and the ability to plan her future. She continues to qualify for services. Kim Stagliano is also Managing Editor for Age of Autism.

Thanks to Kevin Barry and JB Handley for this info on FB. The title alone piqued my interest - I had once written a Huffpo titled "Dr. Paul Offit, Pope of the Church of the Immaculate Vaccination."  Vaccines have had a mythical, pseudo-religious status since their very earliest days it seems.  "The Temple of Vaccinia" is rather regal sounding, don't you think? .  In reality, they are a century plus long Tuskegee experiment.

Before Caitlin, before Bruce, there was another famous Jenner.  Edward.  Dr. Edward Jenner (see below.)

Vaccines have been an experiment since the first patient, James Phipps, patient of Edward Jenner.  To be sure most of early medicine has been trial and error - long before there were any approval/safety processes in place. I happen to know that early cryo-freezing of the cornea for cataract surgery in the 1960s was conducted in Connecticut without safety approval or knowledge beyond the surgeon and the technicians who invented the technology.  A nurse was outraged, and yet the surgery continued.  The result was a highly successful company and a huge improvement in cataract surgery. America was built on risk taking.   But should that theory apply to our kids health in 2016? Today's pediatric vaccine schedule remains a mass experiment.  Ask your doctor to show you the safety data from the government or vaccine manufacturers on the cumulative safety of the pediatric schedule.  Bring a pillow, a blanket and a Kindle loaded with books. It will be a long time before you get an answer.   KIM

By Kim Stagliano

"Teletubbies! Teletubbies! On TV!" 

(Spoken with joy and excitement by my 19 year old daughter with autism.)

"Teletubbies! Teletubbies! On TV!"

(Spoken with horror, and an immediate question on how to block Nick Jr as if it were the porniest porn site ever to broadcast by yours truly.)

Tel.

E.

Tubbies.

Nick Jr. is bringing back the show starting today.

We need a battle plan to prevent the regression that's sure to follow in so many of our homes.

Kim

By Kim Stagliano

My oldest daughter is aging out of school in a month. She has autism. She is 21 years old. She has autism. She is beautiful. She has autism. She is smart. She has autism. She has behaviors. She has autism. She droops to the floor when she doesn't want to do something. She has autism. She perseverates on the photo album in her iPad. She has autism. She wants to print 100 Peppa Pig photos on paper from the printer in our office. She has autism. She has big blue eyes. She has autism. She has a wide smile and full red lips. She has autism. She is my ward as her Guardian. She has autism. She has never kissed a boy. She has autism. She has never driven a car. She has autism. She has a deep, resonant voice. She has autism. She loves Hooplakidz videos. She has autism. She sleeps through the night. She has autism. She eats whatever I prepare for her without complaint. She has autism. She tries so hard to do her best. She has autism. She has a "untestable" IQ below 70. She has autism. She is in DDS programming and on the Medicaid waiver. She has autism. She has a fully funded budget. She has autism. She has shiny dark hair that waves and curls. She has autism. She has a fantastic memory. She has autism. She speaks in 2 or 3 word sentences. She has autism.  She needs a safe, meaningful program where she can grow and thrive and be accepted DESPITE BEING DIFFERENT from the young adults with Down Syndrome and physical challenges.

She

has

autism.

Acceptance means nothing until programs are prepared.

KIM

Last Tuesday I had a blast co-hosting Dirty, Sexy, Funny, Jenny McCarthy's radio show on Sirius STARS channel 109.  

Here are the  intro (16:58) and closing (2:00)  segment which includes a conversation we had about VaXxed, autism, vaccines and the reality of having a child(ren) on the spectrum.  

Thanks so much to Jenny for the invitation and opportunity to put on high heels!   Please share with friends and family.  The information is easy to digest and helps the "layperson" understand why VaXxed is so important.  My goal was to tell an audience waiting to hear about a Kardashian tell all book about the vaccine MMR Dr. William Thompson VaXxed Dr. Wakefield censorship topic in as few words as possible.   Capisci? The segment is 15 minutes and includes Jenny's fabulously funny show intro, banter and more.  

Remember the name of the show is Dirty, Sexy, Funny, so don't go getting your panties in a bunch in the comments - OK???  

 Here you go:

And the quick closing:

By Kim Stagliano

Oh, this DOES sound like fun!  Our friend Jenny McCarthy, of Generation Rescue, has invited me to co-host her Sirius XM show called Dirty, Sexy Funny tomorrow, April 19 from 10am - Noon EDT.  That's channel 109 - STARS.  

You can download a free trial to Sirius or the app - here.  

Jenny's guests include.  WONDER WOMAN!!!!  Lynda Carter, Salt N Pepa (cue the music!), Film Director Adam Shankman, and Ian Halperin, who wrote a "tell all" book about The Kardashians.  

Last year, I was on Jenny's show as a guest on World Autism Day.  Her show is a blast.  Download that free app trial and tune in!  

KIM

(Cat has the day off with her family.  I hope she is enjoying a mountain of chocolate eggs.)

By Kim Stagliano

We wish our readers a very happy Easter Sunday.  When I was child, I had a favorite Easter book called "The Country Bunny and the Little Gold Shoes." Written in 1939, it sent a clear message that a young mother (of 21 babies) could have a dream, a family and prove to those with lighter "fur" and fancier clothes and bigger bank accounts that heart, willpower and love could overtake those who were "supposed" to "win."  The Easter Bunny gave her a difficult task: to deliver a special egg to a very sick boy who lived high on a  mountain.

As a grown woman, with three autistic daughters, this little book resonates loud and clear with it's message of pluck, perseverance and what a mother will do for her children - and others' too.  (See the autism connection?)

If you aren't familiar with the story: With twenty-one baby bunnies to look after, mother bunny Cottontail abandons her dream of becoming an Easter Bunny. But when Grandfather Bunny spies her perfectly behaved brood, he’s so impressed that he makes Cottontail the most important Easter Bunny of all! Originally published in 1939, Country Bunny and the Little Gold Shoes celebrates the timeless values of equality, hard work, and patient ambition. Featuring the Caldecott Award winner Marjorie Flack’s original hand-drawn illustrations, a beautifully redesigned cover, and bonus downloadable audio, this seventy-fifth anniversary heirloom edition is perfect for sharing with a new generation of young readers.

I encourage you to find and read this book to your own children. And for yourself.

We are each Country Bunnies. And we can indeed win the races of life to help others, and to help ourselves too.

Happy Easter, friends. 

KIM

By Kim Stagliano

Book Expo America 2007 for John's First Book Launch

Dear AofA readers, I'm going to share a few thoughts about this book by one of my first friends in the autism writing community, John Elder Robison. I know some of you will get your back up when I talk about our friendship.  And about this new book.

Please stand down.

I am too damn tired to manage a negative day. I have a 21 year old with 3 more months of school and the adulthood cliff awaits. My days are filled with trying to save our funding to pay for a palatable day program for her.  She has a 19 year old sister with autism. She has a 15 year old sister with autism too. As I'm typing this, my back is seizing up with stress pain. I'm exhausted. We haven't slept a full night in years.  Money is tighter than a 20 year old wedding dress. Like so many of you, I've been using biomed treatments and behavioral and educational programs for years and years and years. Anyone remember the old Yahoo group TNOT? Tough nuts and old timers. My 3 kids are tough nuts. I'm an older timer at 52.  Treatments have been hit or miss for us.

Today I want to talk about John and his latest book, Switched On, which is about what happened to him when a treatment WORKED. The treatment is TMS - Transcranial-Magnetic-Stimulation.  John was part of a study conducted by Harvard and Beth Israel Hospital in Boston.  Read about TMS here.

21 yea old Mia's desk. Not staged! She grabbed John's book and mine.

When I first met John in 2007. His Asperger's was painfully apparent.  At the beginning, in the middle and at the end of the day, John is an adult with autism/Asperger's.  We met at the Farmington Mall in Connecticut for lunch.  He barely looked at me. (And I thought I looked fetching that day! HA HA!)  His voice had a rather high pitch for such a large, strapping man.  Check out that photo of us, he's well over 6' tall.    I attended the Book Expo America with him. this is a huge book event, and Random House had featured John's memoir Look Me In The Eye with an impressive splash.  John and I walked the show together. I remember he had a list of books he wanted - and publishers give the books away at BEA.  I had a list too.  He walked into a booth and said bluntly to the young, mostly female marketing staff who was handing out books, "I need this (title) book."   I immediately saw their response.  They looked at John funny. They glanced at each other with the look that said, "Who the heck is this rude man?"

They did not know he was one of the hottest new authors at the event.

He did not know he had  been borderline rude and was being judged by them.  He did not notice their looks of disgust. I did. It bothered me. A lot.

Over the years following that event, I saw John gain social skills because he was interacting with the public in a new way while on book events.  Stupid he's not, and he told me at our first meeting how he had trained himself to look up and make eye contact at predetermined intervals to accommodate his Asperger's. 

But one night, I got a phone call from John that blew me away, immediately after he began his TMS. His words to me?

"Kim, I can read minds!"

By Kim Stagliano

Sometimes dreams come true. Thoughts and ideas on paper spring to life before your eyes.  For instance, I'm a big Harry Potter fan.  I can recall watching the very first movie in the theatre and marveling at how each scene turned the book into a cinematic reality before my eyes.   

When I was a newlywed living in Cleveland, Ohio, I joined the Junior League and volunteered at The Children's Museum. One of their exhibits was "The Great Green Room" from the classic book, Goodnight Moon.   I had no kids of my own, but I knew the book, of course.  And when I walked into the room for the first time, I was transported into the pages. 

As my girls have aged into adulthood, I've been writing the story of their future in my mind's eye. A bakery with an autism theme has been a dream of mine - far fetched - but still, a dream.

On Friday night, I saw firsthand how that dream would look when I had the great honor of speaking at Puzzles Bakery & Cafe, in Schenectady, New York, whose owner, Sara Mae Hickey is an autism sibling.  From their website:

In addition to serving delicious food, the bakery-café provides adults with developmental disabilities with an opportunity for personal growth, as well as a source of income, social interaction, and a sense of purpose.


Sara Mae has done everything right. And I mean everything. From the design of the signage, to the soothing, bright cheerful interior (with a community room) to the menu of fun, healthy and delicious foods, Puzzles would be a great bakery and cafe even without the autism theme.  But that theme is truly the icing on the cupcake.

I think the autism siblings will change the world for our kids.  They are battle tested.  Some will become advocates and warriors on behalf of their brothers and sisters.  Like Sara Mae Hickey has for her sister. 

As April approaches, the month of "awareness", we need to promote businesses and people who personify action, support. Eating cupcakes and drinking "holy cannoli coffee" is a pretty easy way to get started. 

Thank you Sara Mae. Thank you Elaine Rambo Hickey, her Mom, and my FB friend who introduced me to her daughter's work.

Puzzles Bakery. Check it out.

Kim Stagliano is Managing Editor for Age of Autism.

By Kim Stagliano

Do you remember the old joke from grade school?  "Which day of the year is a command?"  "MARCH FOURTH!"    My daughters are now 21, 19 and 15 years old. We're marching forth, but I can promise you it's a forced march, courtesy of autism. What's a "forced march?" 

(military) A movement on foot by soldiers or military prisoners, who must, in order to satisfy a military requirement, travel at a speed or in adverse conditions that would normally tire them excessively.

Can we talk about being excessively tired?

Today I am having my oldest daughter's final IEP meeting before she ages out of school for.... for.... forever.

I've targeted a day program for her and met with the team about getting her a placement there.  It's really quite nice, believe it or not.  It's an artists cooperative and housed in a real art studio.  It's bright, airy, not at all "institutional" and I think she will have a safe, happy time there. At least to start.  Her program will be fully funded by DDS with a one to one assistant.  It's a 3:1 ratio program. Mia will have 1:1. This is rare.  Why? How? Because I have been in the system for five years and have a case manager who taught me the ins and outs of what I would need at age 22. 

I was clueless.

I thought 22 was a lifetime away.

I was wrong.

I know others locally who have kids who are also aging out  - and they are SOL - without funding. Why? Because thev never got into the DDS system - or they did so too late, so budgeting was already in place and did not include their children.

If you have a child on the spectrum over the age of ten, I implore you, as hard as it is, as far away as you think 22 years of age is, to contact your state department of disability services.  Ask a million questions about how to get into the system so that when or even IF your child needs the services, the funds are there.  If you recover your child before that time - amen and pass the gravy.  If you don't, you need services.  Even here in blue state Connecticut, our programs are being slashed by a governor who is a Democrat.   Getting in by age 14 meant my girls were on the list for what funding would be needed at 22.

We're all on this forced march. We're moving forward and fast. We are excessively tired.

No one cares.

Keep marching forth. It's all we can do.  Call DDS. Today.

Kim Stagliano is Managing Editor for Age of Autism.

By Kim Stagliano

The push in books, the media, journals, among politicians to normalize autism, to spread lies that autism has always been among us in the vast numbers we face today, to make it appear to be something that is just a brain difference, or worse, an improvement over mere mortals is disrespectful and demoralizing to all of us who have children on the spectrum. 

Below are videos from a Mom documenting her son's struggles over a year.   For her child, Kreed. For her family.  In my family we have 21

5:20am. Waiting for her iDevices. Up since 3:00am.

years plus 19 years plus 15 years of hardship. There's no point in sugar coating autism here. If anyone thinks this Mom (or I) show disrespect or that we don't accept or love our kids - please just find somewhere else to read.  Autism here is a fractured fairy tale.

The only way we're going to see any sort of serious acknowledgement of the severe impact of autism on individuals, families and society is by taking a hard look at reality.   These videos provide that.  Send us your own videos if you'd like.  We'll run them not to expose our kids - but to protect them.  Patronize us with palliative care?  No thanks, Hillary.  Lump our kids in with "normal" special ed and disabilities?  You think we have special schools for autism, sensitive Santas, autism day at theme parks, additional special education masters level certificates in autism because autism is the same as traditional developmental disabilities or because it is VASTLY different? Get real, people. Open your eyes. 

No one wants to share the dark underbelly of our lives.  The trauma of autism on a family. I see friends whose kids seize weekly, daily. Friends whose kids have such gut problems that they can't go to school and need a feeding tube. Marriages collapsing under the weight of the stress. Bank accounts ransacked. THIS SH*T IS HARD.

Here?  We don't sleep.  We're up at midnight, 3:00am, 4:00am.  We don't go back to proper sleep. Ever. One daughter wants Nick Jr to watch the schedule as each half hour ticks off - not the actual programs.  One daughter wants her DVDs in order in a case and 3 i Devices on which to stare at screen shots from HooplaKidz toddler videos.  One daughter just plain wakes up due to the noise back and forth in our upstairs hallway.   By the time 5:30am rolls around, we've been pacing, putting back to bed, moving over, hiding iPads and remotes for hours.  Then we go to our jobs. And function. Sort of.

Share your videos. Show up in front of politicians with your precious child.  My girls make grown men weep.  That's the severity of their autism - juxtaposed with their beauty and precious personalities.

Kim

By Kim Stagliano

I was looking for a good impending snowstorm meme on Facebook yesterday to tell me whether I'm supposed to buy bread and milk  when I saw a post  from a neurodiversity proponent saying that Marshall Mather, aka Eminem (swear to God I didn't even have to look up his real name that's how hip I am!) has Asperger's.   This stems from a blog post called Eminem And Aspergers Posted by: Emma Dalmayne.

Does he? Or is he a Narcissist? 

Our Teresa Conrick has an encyclopedic catalog of studies, quotes and info.  She offered us this article from a psychologist Am I Asperger's or Narcissist?

"With Asperger’s and NPD,  a lot of the criteria overlap. The difference is that while all people with Aspergers are narcissistic (not NPD, but self-centered; it’s a central trait), all people with Narcissistic Personality Disorder are definitely not aspergers, and can be the total opposite: super smooth and charming."

And this:

Asperger's (AS) and High Functioning Autism (HFA) are often confused with Narcissistic Personality Disorder (NPD). The reason for this confusion is understandable since some of the symptoms found in people with AS and HFA are also found in those with NPD. Some of the similarities between AS/HFA and NPD may include the following:

• apparent lack empathy
• difficulty understanding others’ feelings 
• eccentric personality 
• harsh interpersonal communication
• inability to view the world from the perspective of others
• lack of demonstrated non-verbal cues and inability to pick-up on the non-verbal cues of others
• lack of interest in others
• lack of psychological awareness 
• narrow range of interests and activities
• obvious self-focus in interpersonal exchanges
• preoccupation with their own agenda
• problems in sustaining satisfying relationships
• self-centeredness
• similar eye-to-eye gaze, body stance, and facial expressions
• tendency to react to social problems/stress with depression
• underdeveloped conversational skills

I did a bit of Googling, because as an anti-vaccine autism Mommy, I am so stupid that I think Google has answers to important questions. Here's what I found on blogs.  Hardly agreement even in the Asperger's community.

Search: Eminem Asperger's

Hip Hop Site:

Maybe he does maybe he doesn't. Who cares? And that applies to everybody imo. So what you're autistic. It's just a label. As long as you aren't throwing your shit at anyone I think you're fine.

###
>implying assburgers is a real thing
See: socially inept, selfish, self-absorbed, awkward.
I don't understand why people need to label being "weird" as some autism spectrum disorder.

###

C'mon man. My brother has autism. I can't even have a conversation with the kid. He can't even tell me how his day was. It's a real thing bro, I promise you. I'm sure their are some self-absorbed, quirky/weird people who think it's cute to self diagnose themselves with aspergers and whatnot, but I promise you autism is a real thing.

ND Site

Eminem is an Aspie? Cool.

###

If Eminem is a f*****g Aspie-- and it's not clear from the lyrics whether he's talking about himself, or taking some angst-ridden future school shooter's perspective (which would probably be the first useful thing he's done in several albums now)-- I'm going to plead misdiagnosis and retest under DSM5. This time, I'll answer "NO" to all the things I've learned to compensate for.

He's got a great voice. Wonderful sense of rhythm. Some really great rhymes.

He just also happens to be up there with Adam Lanza on the short list of company I don't care to keep.

BARF!! !! !! !

###

Here's a Best of.....

By Kim Stagliano

Let's take a trip back to Christmas, 1962. A little girl named Michele had a Christmas wish for Santa. Michele wanted to play Mommy. Mommies used to take care of sick children. It was part of their job description. Sniffles and sneezes, spotty rashes and wheezes. That was childhood, after all. Get sick, build an immune system, grow up.  Michele got a wonderful new doll from Santa that year. Her name was Hedda.

Hedda slept through the night like a dream.

 

Hedda smiled at her Mommy

 

Hedda had one more face. In 1962, it was a face that every Mommy recognized and knew how to care for and love.

By Kim Stagliano

Sesame Street announced a new character who has autism and is female.  Many of us in the autism community learned about "Julia" through Autism Daddy - who wrote, "So a few weeks back I revealed to y'all in a blog post that My Name is Frank. I Work at Sesame Street. I am "Autism Daddy" 

Sesame Street has been called to task for its lack of female Muppets.  Rosita appeared in 1991, a Spanish speaking Muppet. Zoe debuted in 1993 and then there was a long dry spell until Abby Cadabby made her debut in 2006.   So in 2015, Sesame Street decided to kill two birds with one stone, I assume.  Female and autistic.   I think a male would have been a better choice, as autism prevalence stats from 2010 show that autism affects boys at a rate of 1 in 42 versus girls at a rate of 1 in 189.  

I watched the first episode as a kid, and have always loved Sesame Street.   I saw Bob "Who Are The People in Your Neighborhood" McGrath at a restaurant in NYC in 2010 and asked the waiter if I could say hello to him.  He agreed, and as I shook his hand, I burst into tears!  "BOB!!!"  I saw "Gordon" and "Susan" walking together at a book event and nearly fainted. I was overcome with nostalgic pleasure.

Sesame Street has has always taught kids about inclusion, and to accept differences.  It's not a big surprise that they are adding a character with autism.  Autism was as rare as a Snuffalupagus sighting in 1969.  As of 2010 (the last year for which figures are available) the rate is 1 in 68.  Another figure quietly slipped into the media last week, whispering, "1 in 45."

And while we all want our kids to be accepted, supported, encouraged, liked and tolerated, many of us in the community worry  that the Sesame Street initiative might gloss over some of the harsher realities of the diagnosis.   I think Sesame Street is to some degree targeting low hanging fruit. Little kids are accepting because the developmental gaps are not too huge. By 5th grade that changes dramatically. By 8th grade? The gap becomes a chasm. By 12th? I can tell you that there are adult/teacher facilitated programs but precious little actual social connection outside of a smile and nod for my girls. And in adulthood? God help us.

By Kim Stagliano

I live 15 miles from Sandy Hook, CT, where Adam Lanza brutally murdered his mother, 26 elementary school students and their teachers and staff members just under two years ago.  Speculation in the media was that Adam had autism or Asperger's Syndrome. My heart sunk. The thought process - "autism = violent behavior" bothered me very much.

Chris Harper-Mercer, the man who murdered so many people in Oregon is also falling under the autism umbrella in the media - because he attended a school that accepts students with emotional disturbance COMMA and Autism and Asperger's. Remember the book, Eat Shoots and Leaves?  Could be about violence, or, with the simple addition of a comma, a book about koala bears.  Even if he had a formal Asperger's diagnosis, his violent behavior would seem to signify co-morbid mental illness and/or brain injury.  

I have so many friends whose sons are on the spectrum - they have enough issues with socialization, peer interactions and finding their way in the world without people turning a jaundiced eye toward them simply because of their diagnosis.

Yesterday, there was a horrible FB page that equated autism and shooters. The sting remains. Many of us have reported this hate age.

At the same time, if you know me, you know I also rail against the "normalization" of autism as just another way of thinking, or a brain difference. I think this denies the real struggles of autism and Asperger's. I think it alters the  response to needs for funding and support and medical care and treatment and prevention and housing and employment and schooling and the list goes on for a mile.

After Lanza, I spoke on CBS Radio.

“I don’t want people to hear Asperger’s and think mass murderer,” she said. “If anything, people with Asperger’s tend to adhere to rules, adhere to laws. They prefer order so this anarchy that Adam Lanza created is anathema to what typically would be an Asperger’s diagnosis.”

She said she would be interested to see what medications Lanza may have been taking so medical professionals could try to determine if they played any role in triggering the rampage.

“We really do need to look at the medications. Pharmaceuticals tend to be left out of the equation and I think they may be a very big part of it,” she added.

Adam Lanza's father described his son as having Asperger's Syndrome.  Our Editor Dan Olmsted countered Lanza's comments with the following, to show the interchangeability of terms. The diagnostic alphabet soup that is like pea soup, not a clear consomme.  Dan wrote:

Well, if he didn’t speak until he was three, he didn’t have Asperger’s. Straight from my hefty copy of DSM-IV, retrieved from the box in the garage: “In contrast to Autistic Disorder, there are no clinically significant delays in language (e.g., single words are used by age 2 years, communicative phrases are used by age 3 years).”

Now you tell me, but assuming his own father has his personal history right, Adam as an infant did have clinically significant delays in language. So if he had an ASD, it had to be autistic disorder or PDD-NOS.

You can read Dan's post here.

Back in 2007, I wrote a similar post on Huffington Post, after the shooting at Virginia Tech.

Autism is the new term for psychotic behavior? I THINK NOT.

There are posts buzzing about the autism lists that the media is saying the murderer at Virginia Tech was autistic. Perhaps a relative in S. Korea uttered the word and it got into a press report? Not one individual who has worked with or taught the man has mentioned autism as far as I know. That doesn't mean the rumors aren't already flying.

It's here! Time to save 20% on your CVS (we don't sell cigarettes any longer, they're dangerous!) purchase. All you have to do is submit to a liability free, mercury filled, if it were a car with this fail rate it would be a lemon flu shot!   We ran this post last Fall. But flu shot season, like Groundhog day, happens every year.

LET ME BE YOUR ARM CANDY

MDV seeks GSBWBHAMF for relationship. Could get serious and last a lifetime. Available to hook up anywhere, school, Church, grocery store, community center, drug store, mass merchant store, hospital or walk in medical center. No experience necessary, I'll do all the work. Must appreciate high fail rate, possibility of flu like symptoms for up to several weeks and a bolus dose of neurotoxic mercury.  On the plus side, you might be so injured as to receive compensation from the United States Government. Take a chance. Let me roll up your sleeve tonight, Call (666) 637-2079.

By Kim Stagliano, December 2014

New outlets reported last week that the flu shot is a poor match for the current viruses.   Fox News pointed out the some experts are questioning the CDC's forecasting:

CDC sent an advisory to doctors noting that one component of this year's flu vaccine was only partially protective against the predominant flu virus, known as influenza A (H3N2), which has mutated since the current flu shots were made....

Join me at the Autism Education Summit in Dallas later thing month where I'll be on a panel with JB Handley talking about autism and adulthood. 

By Kim Stagliano

Today is the first day of school for my three daughters.   Bella, my baby, is a freshman in high school. She turns 15 this month. Gianna "graduated" last year. She turned 19 in July.  She is now in the "post-grad" program.

Ah, but my beautiful first born - my Mia - she is in the very last leg of her school journey. She turns 21 in December.  It  happened in the blink of an eye. Tomorrow is almost here.  Get ready, friends. It's coming for you too.   Like a monster in the middle of the night. No longer under the bed. Its sharp claw reaching up to slash your throat.  (Sorry, I guess Wes Craven's death has stuck with me.)

Back to Mia:

I wish I could say she is rounding third and heading home.  Let's cheer! Let's support her!  She's about to score!

Nope. She's about to age out of school into..... into..... into.....

By Kim Stagliano

Where is Dr. Richard Pan?
Where is Dr. Paul Offit?
Where is Dr. Tom Insel?
Where is Nancy Snyderman?
Where is Emily Willingham?
Where is Liz Szabo
Where is Anderson Cooper?
Where is Jimmy Kimmel?
Where is Penn? Teller?
Where is Amy Schumer?
Where is Ari Ne'eman?
Where is John Robison?

100+ cases of measles, zero deaths, dozens of laws in play mandating vaccines "to protect children." Three beautiful boys with autism die inside of a week? Connect the pox dots.  Pharma wants to sell vaccines. Neurodiversity wants to sell autism as a good thing we need. Hand meets glove.  Surgical glove. And we and our kids get a rectal exam....

FLORIDA

PINELLAS PARK,  FL  — A boy who drowned in a family pool Monday evening was autistic and suffered from seizures, according to police.

He was identified as 7-year-old Aston Beard.

By Kim Stagliano

Not every story on Age of Autism deals directly about autism. Sometimes we just profile the sheer stupidity and callous disregard of people who should know better.  We did this a few months ago with a State Senator who made a joke of vaccine injury.  On camera. His office read our post and apologized. We ran the apology. No need to link any of it here. Water under the bridge.

Today's  subject is one William Coats, attorney at Vandeberg, Johnson & Gandara law firm, and attorney for the Clover Park School District in Washington State. A family was awarded three quarters of a million dollars in a sexual assault case involving their ELEVEN year old daughter with special needs. Mr. Coats failed to see how an assault could possibly harm a girl whose IQ is below 70. As if low IQ, cognitive deficits, mental retardation, call it what you will, means no emotions or feelings or basic humanity.  It does not.

The district admitted it was negligent in its supervision of the boy, but its attorneys argued at trial that the girl deserved damages of no more than $50,000.

“Given her cognitive ability, it is unlikely the girl experienced many of the psychological issues customarily associated with sexual assault, such as feeling guilty or damaged,” the district’s attorney, William Coats, wrote in his trial brief.

By Kim Stagliano

On Saturday, I was at my Okinawan weapons class when a student, another adult, said to me, "You know what? There is a video channel devoted to complaining about you!"   He was shocked. I laughed. He was kind of shocked that I laughed.  But you aren't, are you?

We all know the sites and commenters and bloggers who love to claim that we don't love our kids. We don't  even like our kids. We are bad, bad, bad parents because we want to "change" our kids.    Can I have a "get real!"?

Every parent I know with a child who is a toddler or  in his or her late teens or an adult works non-stop to make life better, safer, healthier and dare I say it, more "normal."  Doesn't matter what they think in terms of causation, vaccination, education; autism parents make James Brown look like a slacker.

Later on Saturday, Bella, my youngest, brought me her shoe.  She sat down and expected me to put it on her foot and tie it. I did not. (Oh dear, maybe I am a bad mother after all!)  No indeed. I sat in front of her, dead silent. No expression on my face. I waited. Tick tock tick tock.  In about 45 seconds she bent down and put the shoe on her own foot.  Step 1 accomplished.  I kept quiet. Stared at her.   Another 45 seconds passed and then she said, "Puh."  Doesn't sound like much does it? But I knew that "puh" is the last sound in the word help. Bella was asking me for help. 

Yesterday, she came to me again with her shoe. Here, I'll show you what happened. (Sorry, I never remember to turn my iPhone sideways.)

By Kim Stagliano

By now you've probably read about the United Airlines flight in which the pilot expelled a family whose teen daughter with autism was struggling over her meal.  I've been there. You've been there. Perhaps not on a plane,  but as autism parents, we've all been in situations whereby our kids are having a really rough time, exhibiting behaviors and despite our Herculean efforts, we simply can't get them to settle down fast enough to please the strangers around us.

This time the stranger was the pilot.

An Oregon family on their way back from Disney World was unceremoniously taken off an airplane because of their autistic daughter after the pilot refused to fly with her on board.

Dr Donna Beegle said that she is filing a discrimination lawsuit after she and her 15-year-old daughter Juliette were taken off a plane at an emergency stop in Salt Lake City as they flew on a connecting flight from Houston to Portland.

Juliette Forbes refused the food that her family had brought along, and the United Airlines economy passenger was eventually given hot food from first class after her mother argued that it was necessary to prevent a meltdown.

Read more: http://www.dailymail.co.uk/news/article-3075027/The-bizarre-terrible-moment-family-taken-airplane-police-pilot-says-didn-t-feel-comfortable-flying-autistic-teenager-wanted-food.html#ixzz3ZrXe4iNN

It's a horrible feeling of inadequacy. Shame. Anger. Exasperation. Worry. Sympathy for our kid. It breaks our hearts.

Didn't the pilot fly over the Blue Eiffel Tower last month?  Didn't he see the Empire State Building all gussied up for April? Why didn't he have an inkling as to what is autism, as we have just finished April's Autism Awareness Month?

The Light it Up Blue campaign combined with the ever increasing push to teach Neurodiversity whereby autism is called "another way of thinking" has sold our kids down the river. The general public does not KNOW that behaviors can be severe.  They do not know that it can be difficult to ratchet down a meltdown. They do not know that parents work tirelessly to help their kids and at every turn something as simple as a sound can turn a day into a nightmare.

By Kim Stagliano

My friends know that I am a nut for advertising.  I have a tremendous recall of jingles, slogans and campaigns dating back decades.  In 1980, I took a high school  English course called "Intro to Advertising" and was hooked.  We read Subliminal Seduction and The Hidden Persuaders which shared many of the tricks used by pharma today - conjure guilt, doubt, worry to sell this pill, that deodorant, this mouthwash. 

While a junior at Boston College, I attended a presentation by a senior executive at what was then called Hill Holliday Connors and Cosmopulos, Boston's largest ad agency.  The day after the presentation,  I took the T to Boylston Street station, marched into the Hancock Tower to the 39th floor and asked the receptionist to please call Mr. Justin Harrington to tell him Miss Kim Rossi was there to ask him for a summer internship. (Can you see the prototype Mother Warrior?) 

I got the internship.

Paid. ($150 a week - a fortune!)

I stayed on as an intern through  my senior year and had a job offer as an assistant Account Executive in May of 1985.

We've all been thinking about the current jackbooted thug push to force vaccination on parents from coast to coast.  From SB277 in California to HB 6949 in my own state of Connecticut. The measles "epidemic" (insert tin foil hat emoticon here) from Disneyland was the launching pad for these bills, which seek to remove parental and personal vaccine choice. 

It's Mother's Day as I type. The day we honor, respect and revere the women who gave birth to us, raised us, carry on the strength of a nation. Motherhood is indeed as American as apple pie.  Motherhood is under attack by these bills.  I grew up in Massachusetts - next door to New Hampshire, whose license plates read, "Live Free or Die."  What happened to American freedom?  Parents who allow their kids to walk from point A to point B are called "Free Range" and persecuted.   Hospitals are whisking children away from their parents in a Nanny State gone wild.    I believe we need a village to care of our kids - but when did the village become a military school?

By Kim Stagliano
 
Yesterday, I wrote a piece for The Washington Post that took off pretty quickly. It was trending #3 on Google last night for autism.  (Below is an excerpt and link.) What I really want to share with you are some of the emails and messages I received throughout the day. The WaPo comment thread ranges from agreement with to anger at me.  That's fine.  The personal messages are what matter to me, not anonymous rantings. I try to respond to each email, (even the negative ones!) By the way, I had a terrific editor who worked with this article, and she created the title she thought would work best for WaPo. I would not have said I despise the month, but the headline stands and certainly got attention, which is what a good headline should do.

Today, you’ll be seeing a lot of blue: World monuments will be cast in blue lights, your co-workers will be wearing blue clothes, and companies will be hawking blue products. Why? April 2 is World Autism Awareness Day, when advocacy group Autism Speaks “celebrates” its international Light It Up Blue Campaign. But while you’ll be seeing blue everywhere, I’ll be seeing RED. The feel-good frippery of Light It Up Blue cloaks an often debilitating disorder in an air of festivity, with balloons, sparkling lights and pep rallies. The campaign implies autism is a party, rather than a crisis. For families living with autism, reality is far more sober, and their needs extend far beyond “awareness.”

I dread April, which has been designated as Autism Awareness Month. As mom to three young women with autism – ages 20, 18 and 14 – I eat, sleep and live autism every day. My youngest daughter, Bella, can’t speak a word and was abused on a school bus, leading to a criminal case. My oldest, Mia, had hundreds of grand mal seizures a year from ages 6 to 10. My middle child is wracked with anxiety. For all three, I have to cut their food, tend to their monthly feminine needs, and bathe them. They will need that daily living assistance forever; when I die, a stranger will have to do those things for them. That is why I bristle at the festive tone of April, the suggestion that the circumstances of my daughters’ existences are to be celebrated. For me, this should be a month of solemn acknowledgement and education about a global crisis.  Read My three daughters are autistic. I despise Autism Awareness Month.

---

I just wanted to thank you for the op-ed you wrote in the Post. My sister is autistic, and it always bothered me that peopled wanted celebrate autism; if people really wanted to help they should give to medical research to help cure or alleviate autism. It's certainly no walk in the park and it makes me angry too when people act like it's fun.

---

As the father of a daughter with severe autism, I just want you to know that I admired your column and empathize with your dismay. But it's thanks to columns like yours that people will, sooner than later, understand a great deal more than they did. My gratitude to you.

By Kim Stagliano

Today is the last day of March. Basketball games are underway with four teams from somewhere, I'm told. We had snow in Connecticut yesterday. Again. That was a treat at 6:00am, to look out the kitchen window and see fat flakes sticking to the brown, half frozen ground.

I'm gonna miss March.

I dread April.

If March brings madness, April brings agita - that's Italian for heartburn. April is Autism "Awareness" Month. As an autism parent, writer, advocate yadda yadda, I eat, sleep and live autism 24/7/365.  I understand that much of the world does not do this - at least not yet anyway. And it's good to share information with outsiders that can help our kids live happier, healthier, safer lives. I'm not against teachable moments.  I'm not against honoring my girls and everyone everywhere on the spectrum.

I am against the outright celebratory tone of April. I always consider this a month of solemn commemoration.

Not. My. Daughter! (Molly Weasley)

(Note: proactive instructions on how to express your concern for this bill are at the end of this post. There is a hearing TODAY at 10:30am.)

Dear Representative Matthew Ritter:

RE: Casting Your Reduction Spell on Religious Exemptions in Connecticut HB 6949: 

AN ACT CONCERNING CHILDHOOD VACCINATIONS.

To require that statements from the parents or guardian of a child seeking a religious exemption from a required immunization be notarized and include language attesting that such parents or guardian have reviewed and understand information regarding the risks of both immunization and failure to immunize.

My name is Kimberly Rossi Stagliano. I live in Fairfield County. I have three gorgeous daughters with autism who currently cost the state of Connecticut more galleons than Harry Potter had in Gringott's bank vault.   I am a Mother first. And then I write. Oh, I've written fiction. It's fun to make stuff up.  I only wish the bulk of my writing was make believe. It's not. 

I write for Huffington Post. I've written for blogs around the nation: Dallas Morning News, Today Show, others. My family and I have appeared on ABC's Good Morning America to talk about the financial toll that autism takes. I've been on CNN, morning shows, you name it. Not a single appearance has been about a frivolous topic.

I understand that you have introduced a bill that will restrain my ability, my neighbors' ability, to exercise their freedom to say no to a vaccination on the pediatric schedule.   You are taking away healthcare rights with HB 6949.

Let's say you have a child who had an adverse reaction to a vaccine. It happens. And then you have another baby. How do you know if this baby will have the same reaction? There is no pre-vaccination testing to see if a baby is allergic to any ingredients. The 48+ vaccines on the current schedule have never been tested as a whole. No one knows if 8 vaccines at the 2 month check up is safe  for any let alone all babies. (Hep B, RotaTeq, Diphtheria, Tetanus, Pertussis, Hib,  Polio, Pneumococcal) Every "well" check is a visit to Foxwoods Casino, Representative Ritter. 

How much do you know about vaccine injury? Have you ever sat down with a parent who is making these hard healthcare choices? Do you think we do so lightly? I can assure you, we do not. Once injured, the result is life changing. Some children die. Some become CT DDS clients.  And then they cost you and the state money. And they don't vote.  But I do. 

I don't know who is whispering spells into your ear, perhaps a confundus charm - there has been a push from coast to coast to limit vaccine exemptions on the heels of the measles panic in the Magic Kingdom  These pushes have failed in Washington, Oregon, Maryland, because constituents have said, "Do Not Mess With My Healthcare Rights."  I know we are an insurance heavy state. I know insurance and pharma go together like Abra and Cadabra.

I am telling you that this bill, HB 6949 needs to meet an Avada Kedrava spell, and die on the vine.  Nutmeg state parents deserve to make healthcare choices for their own children without government imposed hoops.

Today? Vaccinations for children. What's next? Will teachers need a flu shot to go to work? Will State workers need to prove they have had every booster pharma and CDC demand? Are you prepared to take an Ebola vaccine fast tracked through the system?

I want you to have the right to say no to a medical procedure. I want that right as my daughters' Mom - and legal guardian.

Thank you.

Strega Kim

Kim Stagliano is Managing Editor of Age of Autism. Her new novel,  House of Cards; A Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book. Her new book, with Tony Lyons, is due out in April.

###

Dear Connecticut NVIC Advocacy Team Members,

Your action is needed now to stop the state of Connecticut from restricting the religious exemption to state mandated vaccination. We apologize for the late notice. We just caught this today. 

HB 6949, requires parents who object to mandated vaccines on religious grounds to submit a notarized statement claiming that vaccination would be contrary to the religious beliefs of the child, and that they “have reviewed and understand evidence-based instructional material provided by the Department of Public Health regarding the risks to such child and to others of such child failing to receive adequate immunization.”

HB 6949 is scheduled for a public hearing this Wednesday, March 18^th at 10:30 am in Room 1D of the Legislative Office Building.

From the Classic, Whatever Happened To Baby Jane? May Jimmy and Molly NEVER have to ask that question, as we have.

By Kim Stagliano

Jimmy Kimmel has set aside "comedy" for a moment to have a serious chat with his viewers about the dangers of vaccine choice.   I've been a big Kimmel fan for years, especially as he is a popular guest on The Howard Stern Show.  (As an aside, Howard no longer uses the R word as a rule, so no need to send me comments.)

While Rob Schneider, a comic, is an idiot and tin foil hat wearing mental patient for advocating for medical choice and comic Jenny McCarthy is a bimbo with fewer brains than the scarecrow, Jimmy Kimmel is the genius of late night TV - a comic who knows exactly what's best for you, because he is anti-vaccination choice.  GOT IT you big dummies?

Kimmel has a beautiful new baby girl named Jane. I tweeted him, "@JimmyKimmel I love a daughter with vax injury & autism. May you NEVER ask 'Whatever happened to baby Jane.'" 

Clever yes?  And I'm sure completely ignored. Like the facts about vaccine injury. There is a second video - "idiots on the street" format interview - not bothering to link it here.   I understand the role of the late night comic is to lampoon topics.  I love naughty, irreverent, in your face humor. Harpooning families dealing with the aftermath of vaccine injury is about as funny as calling Child Services on parents of kids emaciated by chemo.

Kimmel's show is on ABC. ABC is owned by Disney. Disneyland was the launchpad for the measles hysteria that took the place of the Ebola scare.  Since the measles scare, several states have rammed vaccine exemption rights bills into their houses.  California, Oregon, Washington and there's talk that it's happening here in my home state of Connecticut too. Comics have long been used to disperse propaganda, a government sanctioned message, call it what you will.

 I sent this video to Kimmel too. It's my beautiful 20 year old daugher getting ready for school. She is vaccine injured. And she has had a serious seizure disorder. And she has autism. And I ask every day, "Whatever happened to baby Mia."



Kim Stagliano is Managing Editor of Age of Autism. Her new novel,  House of Cards; A Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.  Look for 101 Tips for Parents Raising a Daughter with Autism, by Tony Lyons with Contributions by Kim this Spring.

The desk of a beautiful 20 year old with autism, vaccine injured. That Grover doll went to each pediatric appointment. We DID the right thing. Didn't we?

My name is Kimberly Stagliano.  I am the daughter of a World War II veteran. I am a college graduate.  I pay my taxes. I vote in every election. I recite the Pledge of Allegiance including "One Nation Under God," and sing the Star Bangled Banner with my hand over my heart at every sporting event (albeit badly). I am the mother of a vaccine injured daughter, now 20 years old.

Sometimes - sometimes -  things you trust, things that are part of the fabric of America - they betray you in the cruelest fashion. They harm. They wound. They change lives.  And then lies follow. Covers ups. IT CAN NOT BE TRUE.

The victims are the criminals. It's an age old "defense." It's how civil wars start and brothers kills brothers. Neighbors turn in neighbors. Someone benefits from that fear. Rarely the brother, or the neighbor. Dr. Seuss wrote "The Sneetches" -- remind me, which were best, those with stars upon thars or not?

My daughter's first word was "Ober," her approximation of "Grover," the furry blue monster from her beloved Sesame Street. She was ten months old.  She was diagnosed with autism at 4.

Check out the last 30 seconds of this short clip from the sitcom Married with Children.   This episode ran on September 20, 1992.  Hardly the dark ages of death and disease in America, correct?  Here's the episode synopsis.

Seven gets some. Bud gets some, never mind she has measles. Al and Peggy get some because it's quicker than talking. Only Kelly doesn't get some but that's by choice because the guy is a jerk. And then he disrespects Kelly so she disrespects his face with her fist. Bud meets up with Kelly's date who insults Kelly by calling her a tramp, not realizing that Bud is her brother. Bud responds by hugging the date and coughing in his face as he has measles which are highly contagious and tells him to consider the measles a gift from Kelly. 

 Cue the laugh track.  What has changed since 1992? Well autism and pediatric chronic illness have skyrocketed.  Ask yourself how measles went from sitcom fodder to ISIS-level danger in  two decades? Then ask why.

Oh, that singing in the background at the beginning of the video I taped?  My vax injured 20 year old with autism, born just two years after this episode ran.  Thanks to AofA reader BSK for the heads up.  KRS

By Kim Stagliano

The Chicago Tribune has been no friend to the autism community.  And their article about Dr. Anju Usman is no exception - see below. They have consistently dredged up stories that denigrate, belittle and cast aspersions upon all manner of autism treatments.  They have attacked families (from this I know) and the professionals who devote their careers to helping children on the spectrum.  Here is a list of several articles about The Trib that we've written over the years. 

Tribune Watchdog Or Tribune Skunk? Part 1

Tribune Watchdog Or Tribune Skunk? Part 2

The Chicago Tribune and Autism Treatment Community: Thrice Bitten, Twice Shy

Autism Recovery Revisited: Tell the Chicago Tribune They Are Wrong

An Autism Mom's Video Response to the Chicago Tribune Story

Autism Father to Chicago Tribune: "Cancel My Subscription."

On Media: The Chicago Tribune Fails Children with Autism

Chicago Tribune Trumpets Another Anti-Treatment Autism Lawsuit. Why?

Cherry Picking Science: Chicago Tribune's Shotgun Journalism Strikes with Another Shoddy Hit Piece

Chicago is the home of the American Academy of Pediatrics. A union for physicians who used to be the guardians of pediatric sick and well care management.  Peds have become vaccine retailers and gatekeepers to see myriad specialists kids now need thanks to chronic illness, like allergists, gastroenterologists, neurologists, endocrinologists, ENTs and psychiatrists.  And let's not forget their great skill in sending our kids to Early Intervention.  Our Editor-At-Large Mark Blaxill wrote in Support Your Pediatrician, Condemn Their Union:

The American Academy of Pediatrics (AAP) is the union of American pediatricians. Their job is to defend the commercial interests and reputations of their constituents regardless of what the larger social interest might be. One activity of the AAP is to lobby the Federal Government to spend more money to help pediatricians to make more money.

Even when they make the case for things like expanded health insurance coverage for children, they’re also making the case for their members. Along the way, they make sure they make a case for things like: “Providing appropriate physician payment within Medicaid and SCHIP to ensure children receive access to care.”

The AAP also has a journal named Pediatrics, a publication that they claim is “intended to encompass the needs of the whole child in his physiologic, mental, emotional, and social structure.” In practice, the journal serves the agenda of the practicing pediatrician, often publishing shoddy science if it furthers the policy interests of the Academy. The stunning failure of Pediatrics to face the facts regarding the autism crisis is one of the sad byproducts of a tragic situation in which so few medical leaders have found a moral compass to guide their choices.

If you want to cut to the chase and find the commercial life blood of the pediatric profession you don’t need to look much further than the pages of the AAP’s web-site where the childhood immunization program is featured under nearly every tab. You can’t underestimate the importance of the childhood immunization program to the business of the practicing pediatrician. The reason goes right to the heart of the economic tension between customers and suppliers in our upside down health care system.

In 2010, The Trib ran this article, Bad Medicine, about my family and the fact that we were using Dr. Boyd Haley's OSR - accusing me of sprinkling toxic waste onto my children's breakfast.  It was a twisted display of vitriole - and the former cupcake food beat turned science beat writer did her best to disparage me. And Dr. Haley.  My daughter did so well on OSR that she started speaking and learned to tie her shoes.  I even have a photo from the first day she tied her own sneakers - thanks to increased fine motor skills as a result of OSR.

The Tribune ran this article about Dr. Anju Usman, a physician in Chicago who has devoted her life and put her career on the line to treat sick children - who happen to have autism.  We support Dr. Usman's work. And we thank her for her service to pediatric health and wellness.

Naperville Doctor Disciplined in Controversial Autism Case

A Naperville doctor nationally known for offering alternative autism treatments has agreed to have her Illinois medical license placed on probation for at least a year after state regulators accused her of subjecting two children to unwarranted, dangerous therapies.

We owe a debt of gratitude to Tony Lyons, Publisher at Skyhorse Publishing in New York. His committment to books about autism is..... well - why don't we let him tell you himself.  (Thank you to The Thinking Moms' Revolution for the video.)

We will feature one Skyhorse book each day for the next 12 days. Consider it a literary Advent Calendar or a Menorah with twelve lights...

Readers - Kim here - if you purchase the paperback, send me an email with your mailing address and I will sign and send a bookplate for you to have a signed copy.  The book is a good gift for teachers, therapists, docs, family and friends!  [email protected].  Tell me to whom you want the bookplate signed. Thanks!


All I Can Handle I'm No Mother Teresa by Kim Stagliano

Dr. Spock? Check. Penelope Ann Leach (Remember her?) Check. What to Expect When You’re Expecting? Check. I had a seven hundred dollar Bellini crib for God’s sake!

Everything was perfect…”

...and so begins Kim Stagliano’s electrifying and hilarious memoir of her family’s journey raising three daughters with autism. Always outspoken, often touching, and sometimes heartbreaking, Kim Stagliano is a powerful new voice in comedic writing—her “Kimoir” (as she calls it) is the next must-read within the autism community and the literary world at large.

LET ME BE YOUR ARM CANDY

MDV seeks GSBWBHAMF for relationship. Could get serious and last a lifetime. Available to hook up anywhere, school, Church, grocery store, community center, drug store, mass merchant store, hospital or walk in medical center. No experience necessary, I'll do all the work. Must appreciate high fail rate, possibility of flu like symptoms for up to several weeks and a bolus dose of neurotoxic mercury.  On the plus side, you might be so injured as to receive compensation from the United States Government. Take a chance. Let me roll up your sleeve tonight, Call (666) 637-2079.

By Kim Stagliano

New outlets reported last week that the flu shot is a poor match for the current viruses.   Fox News pointed out the some experts are questioning the CDC's forecasting:

CDC sent an advisory to doctors noting that one component of this year's flu vaccine was only partially protective against the predominant flu virus, known as influenza A (H3N2), which has mutated since the current flu shots were made....

"No one really knows what is going on here with the flu strains and the match using the current methods," said Michael Osterholm, an infectious disease expert from the University of Minnesota.

In a 2011 paper, Osterholm found flu shots only protected about 59 percent of the population. "For all we know, this vaccine may work as well as it does every other year."

Dr. Richard Zimmerman of the University of Pittsburgh Medical Center, however, said that, while not perfect, the methods offer "a reasonable proxy" for what will happen.

Can you imagine any other product failing to perform so badly and yet being pushed, in some cases virtually forced, on Americans like the flu vaccine?  If this were a car, heck, a a child's toy...  it would be banned for abject failure. 

The war on flu is akin to the American war on drugs. We know it's not working, we know it's creating problems, we know the return on investment in terms of actual health is dismal but we keep hammering away with "Just Say No."  Someone has a good return on investment though - that's American healthcare.

Managing Editors Note:  I've heard of some very popular boy band called "One Direction." I couldn't  hum a single bar of their music. No idea what they look like. But I like their name because it reminds me of the Age of Autism team. We move in ONE DIRECTION. Forward. While many around us dwell in negatives, in the past, in what's "wrong" with our community and pontificate on and write some seriously nasty gaaaaah-bage as my Mom would say in Boston, our team has been "busy, busy, busy" writing books.  Actual books that can never be rescinded, removed or retracted. Old school. BOOKS. The volume of volumes is dare I say? Voluminous!  (Humor me, it's the end of a long weekend.....) 

Special congrats to our Editor Dan Olmsted and Editor at Large Mark Blaxill on the February debut of Vaccines 2.0: The Careful Parents' Guide to Making Safe Vaccination Choices for Your Family. 

We hope that you will buy one or two, perhaps more, of these books. Yes, money is tight. But I can promise you that each and every book will help you as you work with your  loved ones with autism, as you discuss the needs of our community with medical providers and politicians and will give you hope that we will all move in ONE DIRECTION. Forward. Like a train.

Vaccines 2.0: by Mark Blaxill and Dan Olmsted The Careful Parent's Guide to Making Safe Vaccination Choices for Your Family


Plague by Kent Heckenlively and Dr. Judy Mikovits - One Scientist's Intrepid Search for the Truth about Human Retroviruses and Chronic Fatigue Syndrome (ME/CFS), Autism, and Other Diseases

The Big Autism Cover Up by Anne Dachel -  How and Why the Media Is Lying to the American Public

Vaccine Injuries by Louis Conte and Tony Lyons - Reveals the truth behind the controversial issue of vaccine-related injuries.

The Autism War - a Novel by Louis Conte - Tony Colletti, a good suburban cop and father of a child with autism, finds himself drawn into the controversy over the apparent but rarely acknowledged connection between childhood vaccines and autism. His quest to uncover the truth forces him to risk all he holds dear while confronting corrupt government officials, the powerful pharmaceutical industry, and disturbing elements of his own past.

The Vaccine Court by Wayne Rohde - The Dark Truth of America's Vaccine Injury Compensation Program

Finding Lina by Helena Hjalmarsson - A Mother's Journey from Autism to Hope

Saving Ben: by Dan Burns A Father's Story of Autism

The Thinking Moms'  Revolution - Autism beyond the Spectrum: Inspiring True Stories from Parents Fighting to Rescue Their Children

By Kim Stagliano

Ok, I don't mean that in the literal sense of the Seinfeld episode where Elaine had a limited supply of "The Sponge" which was an OTC method of birth control a couple of decades ago, and was pulled from the shelves for potentially causing toxic shock.   (Insert "vaccine toxic shock but still on the shelves" joke here.)   But in my recent article about Seinfeld's declaration of autism, I told Jerry he was not spongeworthy.   And now he has told the world he is not autistic.

Seinfeld publicly retracted his self-diagnosis on national TV this week.   And I would like to thank him for doing so.  I'd also like to thank him for opening up the conversation about the Spectrum in general. We've seen lots of opinions of what it means to have autism.

Those of us with severely affected kids see the difficulties of being a special needs person who has accommodations in all areas of life and for whom guardianship or some sort of conservatorship is the future. Or the present.

Others have children whose autism affects them differently. They are not as disabled, but still have significant challenges not to be dimissed. 

And we heard from adults for whom autism is part of who they are, despite the challenges it has brought them.

Valid.

Valid.

Valid.

Not every voice was polite. Comments and Tweets were heated. So what? That's how we learn and grow.  The epidemic of people with autism is growing into adulthood. My own daughter turns 20 next month, with her sisters close on her heels.  We need to accept my daughters where they are on the spectrum. And your kids where they are. And adults where they may be.

(Note to review the CDC diagnostic criteria for autism, visit - CDC.gov.)

By Kim Stagliano

A fews days ago I began Tweeting Jerry Seinfeld like a madwoman about his interview with Brian Wiliiams of NBC. He told Williams, "I think on a very drawn out scale, I'm on the Spectrum." (Insert Kramer double take here.)

You know what, Jerry? I think on a very drawn out scale, I'm a 19 year old SuperModel. Oh wait, I'm not. I'm a 50 year old mother of three daughters with autism. Actual autism.

• Earlier this month I visited "Dayhab" programs for my 19 year old.
  
  
• I haven't slept a full night in 9 months courtesy of my 18 year old who is convinced the house alarm is going to go off in the middle of the night and wakes 2, 3, 4, 5 times in a tizzy. By tizzy I mean screaming fit.
  
  
• I'm waiting for test results for my 14 year old to hopefully (fat chance) tell me what is going on inside her body, everything is a guess. She does not speak.

So when I heard that Senfield, whom I adore as a comic, blithely said he thought he was on the Spectrum, I became angrier than The Soup Nazi. Sure, he probably meant Asperger's Syndrome and not full autism. I get that. Many people use the terms interchangeably - which is incorrect - but I understand how it happens when you are outside of the autism community.  But Asperger's is (or was, since DSM-V has muddied the waters with the merging of AS and ASD) is also a diagnosis that is fraught with challenges of a different sort. Not better, not worse, but different. 

Let me give you one idea of what it's like to have Asperger's Syndrome, or autism for that matter. 



THAT.

By Kim Stagliano

I read this story in the NYT with sheer horror, followed by a searing sadness.  A 21 year old student with autism choked to death while at school.   On a muffin.  From the article (which you can read here.):

The New York City Education Department is investigating the death of a 21-year-old student with autism who choked on a muffin at her school in Brooklyn at lunchtime on Tuesday.

The student, Dyasha Smith, was nonverbal and wore diapers, according to her mother, Catherine Smith, 70, who took Dyasha in as a foster child when she was 3 and later adopted her. She said her daughter was supposed to have full-time supervision on the bus and at her school, Star Academy in Cobble Hill.

She said she had told the school’s staff members that they needed to cut up her daughter’s food, because otherwise she would put too much in her mouth at once. “She will take a handful of something and put it in her throat and swallow it at once,” she said, adding, “She’s like a child, like a baby child.”

Does this sound familiar to you? It sure does to me. I cut my kids' food. I worry about every lunch I pack. In fact, just last year, one my daughters choked on her lunch - and a quick thinking, well trained paraprofessional performed the Heimlich manoeuvre on her - saving her life. SAVING. HER. LIFE.  Do you want to know what she was eating? Apple slices. I remember slicing the apple that morning and asking myself if they were too thick for her. "Nah, they seem OK," I told myself.  She almost choked to death.  My daughter.

By Kim Stagliano

On Sunday, Cathy Jameson wrote about Melanie Baldwin, a member of The Thinking Moms' Revolution, wife, and mother to Luke, a youngster with severe autism. Melanie was battling a recurrence of cancer that had spread to her bones. By Monday, Melanie had died.

The autism community, like every special needs community I assume, lives in an inverse world of fear when it comes to death. Most parents dread with all their heart and soul having a child pre-decease them. It's unnatural. It's a grief like no other. I can remember my Grandmother, who was close to 80 when her oldest daughter, my Auntie Frannie, died from lung cancer. She wept, "No parent should watch her child die." Her child was 60 years old.

In autism we know that our kids rely on us every moment of the day and we fear dying before them.

A few years ago I read the obituary of an elderly woman whose adult son had autism. It struck me dumb - her son had suffered a vaccine injury and that was part of the obituary. Leila Simon was a "prototype" Thinking Mom.

There is a fund for Melanie's son Luke, if you have a spare $5 that would make a difference.

###

From HuffPo:

By Kim Stagliano

We're excited to report the latest news from State Pharm insurance - like a good neighbor, they are eliminating all actuarial tables, all statistics, all facts on age, sex, health and will offer insurance to anyone, everyone. 

Yes, my fellow Americans - State Pharm now realizes that risk is simply an outdated concept.

You're 67, smoke three packs a day, have two stents and have already had one leg amputated because of diabetes? How's about $500,000 of term life insurance for just $256.00 a year, Bunky! Your premium will never go up and you're covered until 2099!  Plus, "Jake" will come make you hot coffee every day for a month, and make your bed!

You're 36 and parachute out of a 1924 bi-plane after three hours of wine tasting in Sonoma every weekend? Sign on the dotted line for $1,000,000 in term life for just $187.50! State Pharm will throw in a trucker cap, can cozie and a polar fleece blanket for those chilly winter nights as your special gift.

Nothing will go wrong. No one will get hurt. Everything in America is safe, and should not be questioned.

So hurry up and call your local agent NOW.   Call before November 1st and State Pharm will offer you a discounted ticket to Pamploma for the running of the bulls and one of their nifty red shirts. Hey, they ARE a good neighbor.

###

We support Rob Schneider, who was terminated from the new and very funny and endearing State Farm insurance ads, reprising his "Copy Boy" character from SNL for having spoken up on the topic of healthcare choice as it relates to vaccines. When I first saw the ad I ran to the TV and smiled. Now? Well, there goes the neighborhood.... Here's a detailed report:

From NSNBC International - Hollywood actor Rob Schneider got first-hand experience about the fact that corporate capitalism is not democracy and that publicly raising concerns about vaccine safety and efficacy issues results in a swift lesson about the fact that freedom of speech is a right that is mitigated by the fact that one’s livelihood and income may be threatened by addressing issues of concern for a multi-billion dollar per year vaccine industry.

Freedom of Speech exists in these United States. That is, if one can afford Unemployment...  Read more. 

Kim Stagliano is Managing Editor of Age of Autism. Her new novel,  House of Cards; A Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.

By Kim Stagliano

With horror and a sickening flashback to a Stephen King novel (and film by the same name) I watched the Bay Village Ohio teens play a terrible "prank" on a student with autism, using the ALS Ice Bucket Challenge as their "medium." (See below.)




As the epidemic of children with autism grows older, I fear they are in more danger than ever. Toddlers are naturally protected by most all mothers, not just their own.   The "it takes a village" method of child rearing, one could say. Which of us would not run to the aid of almost any child under the age 12, 13, even 16? Ah, but as our children turn into adults, that coccoon of safety becomes eroded. Cute faces have pimples. Chubbie tummies change into burgeoning figures. 

I'm in the position of having three teen daughters with autism. You want to talk about paralyzing fear for them?  Pour a cup of coffee and we'll chat - for six months.   Already one of my girls has been criminally abused (school bus, 2010.) And yet, like parents of typicals, we have to find a way to let our kids grow up and move forward.  We fight our own instincts to protect our vulnerable children, and force ourselves to "let them go" a bit and learn about the world.  But for the love of all that is holy, NOT this way.

Bay Village, Ohio has an opportunity to set an example for ALL villages.  As of this writing, police are considering arresting the teens.

Kim Stagliano is Managing Editor of Age of Autism. Her new novel,  House of Cards; A Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.

By Kim Stagliano

Where Is Your Child with Autism Going to Live as An Adult? Thought about it yet? I sure do. Oh, I joke in my usual fashion, when speaking to groups, "Ha ha! We ARE a group home!" (My three girls have autism, in case you're new here. Oh, and welcome.)   My oldest is 19. My youngest is 13. These questions are not far off for us - where will my girls live as adults. With their Dad and me?  I've said that we'll have a big house with a special ed wing and an elderly wing and the caregivers can toss a coin to see whom they care for first.  Aren't I funny?   I don't think so either.  What if they don't want to live with us forever?  What if three grown women want independence in their fashion? They deserve that. 

Our sponsor VOR (Vee-Oh-Are) is working to protect YOUR right to decide what is the best living option for your adult child with autism.  For some, it might be a group home or even a larger style living situation that could be referred to an an "institution." For others, it might be a community of similar people where routine and sameness matter. Where ever, however - it should be yours to decide.

I ask you to please formally join VOR so that as your child ages, you can keep abreast of the government's misguided policies so that you aren't shocked to death when the time comes.  Because as you know, we are not allowed to die.

Like VOR on Facebook here too please. Thanks.

Kim Stagliano is Managing Editor of Age of Autism. Her new novel,  House of Cards; A Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.

By Kim Stagliano

When actor James Garner decided to help organize and attend the March on Washington in 1963, he wasn’t just listening to his conscience. He and other actors who attended may have been embarking on Hollywood’s first large-scale political act since the days of McCarthyism and Hollywood’s anti-Communist blacklist. http://www.washingtonpost.com/news/morning-mix/wp/2014/07/21/james-garners-legacy-a-commitment-to-civil-rights-and-political-activism/

I love this article about James Garner. What have you done in your life - to go against the grain for what is right? For me? It's talking about vaccine injury and autism. That has meant being called "Anti-vaccine" and an "American Loon" and derided in the media (anyone remember my name splashed across the front page of the Chicago Trib for feeding my girls "toxic waste products" courtesy of Trine Tsouderos? Miss cupcake reviewer turned "science" beat writer?) I am proud to make people uncomfortable. Just as I am proud to support Skyhorse Publishing, Robert F. Kennedy Jr, Dr. Martha Herbert and Dr. Mark Hyman and the new book Thimerosal: Let The Science Speak.

As I type, there is an ad by the State of New York running on NBC 4 featuring a man desperately trying to breath as he coughs, clearly in agony. This is an acceptable way to tell people that smoking is dangerous. But if I, we, dare try to tell anyone what vaccines did to our kids?  We're as welcome as lung cancer. 

By Kim Stagliano

Today we celebrate my middle daughter's 18th birthday. She is beautiful. Funny. Bright. Anxious. Vaccine injured. Autistic.  

Gianna had been "ex utero" fewer than 24 hours before a nurse at Doylestown Hopsital injected her with a vaccine for the sexually transmitted disease Hepatitis B.  A disease I did not have.  That vaccine had 12.5 mcg of mercury in it. I had opted for natural childbirth so as not to put a single chemical into my infant. And then I signed a piece of paper authorizing that toxic vaccine. I gave my consent, but it sure wasn't informed consent. I have the paper in a file.

Gianna's Apgar scores were high. She nursed within moments of birth. She slept. By the time we brought her home she was screaming a high pitched cry. She could nurse, but her mouth worked "funny." I called LaLeche so many times - she was biting me raw. Gnawing at me with an underbite that did not exist during her first feedings. I bled every time she nursed for months.  When I read the infant primate study my jaw dropped. Baby primates lost their ability to suck after birth dose Hep B. So did my baby human.

By Kim Stagliano

I was born in Boston, Massachusetts.  My Grandmother Hannah Veronica Sullivan was born in Boston, of parents from County Cork, Ireland.  My father was born in 1922, and tells tales of discrimination from "the old days" that, well, you've seen my hair, right?   We've come a long way from the outright posting of who can apply for a job, or use a restroom. Or have we?  This line (below) is from an article Help Wanted Adults with Autism  that addresses the serious dearth of jobs for people with autism.    It seeks to offer a bright side by sharing internships that are available through a program called Project Search under the leadership of Dr. David Kuhn Clinical Director at NewYork-Presbyterian Center for Autism and the Developing Brain, - it seems which "county" of autism you live in makes a difference, however.

Interns range in age from 18 to 21 years old. They must have a diagnosis of an autism spectrum disorder, have no violent tendencies, be able to communicate and follow a one to two step schedule.

Almost every person I know with full autism has behaviors, some are aggressive and may be viewed as violent, some seriously aggressive and definitely violent and well, that communication thing? It's the foundation of an autism diagnosis.  And you know what (of course you do, dear AofA readers) sometimes that aggression IS communication. As fas as I'm concerned, this posting is asking for people perhaps with Asperger's (there can be serious behaviors among this population) and maybe -  maybe "brushed" with autism like symptoms. None of my daughters could apply. Could your loved one with autism or Asperger's apply?

Last week I wrote about a vocational opportunity for my oldest daughter, who is starting her post-graduate years within our school district.  The more fully impaired with autism also deserve to work in meaningful jobs that take advantage of their sharp minds, unique processing ability and perseverance to a task while repsecting that yes, there are behaviors and communication deficits. Is this going to happen or not? Or will NINA be reborn as "NAWB" become the new discrimination?

Kim Stagliano is Managing Editor of Age of Autism. Her new novel,  House of Cards; A Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.

By Kim Stagliano

This is my daughter Mia. She is 19 years old and just finished her fourth year of high school.  Next Fall she starts in a new program within our district called Trac21.  This is a pilot program, the first in our area outside of private autism schools, to serve the autism population in their "gap" years between traditional secondary school and aging out at age 22. 

Our Special Education department recognized early on that the "regular ed special ed" post grad program, called "Elite" in our town, was not going to work for the autism population. (Yet another example of the newness of the epidemic in the last twenty or so years. There are almost no housing or work programs specific to autusm.) First off, it is an itinerant program. The students meet in different locations every day of the week. Second, it is primarily vocational in focus with emphasis on the job sites where you usually see people with disabilities, like stocking shelves at retail and working in a grocery store.  

I was on a committee that ate Dunkin Munchkins and drank coffee for two solid years in an effort to find a site  for Trac21, plan vocational locations and craft a meaningful day for the two students who would be part of the 2015 school year. 23 months into planning, we had a pilot program. Mia will have almost a full school day, with academics in the morning, vocational work, life skills training and the familiarity of a room within the high school near friends and staff she already knows and trusts. Overall, I'm pleased. 

By Kim Stagliano

Wednesday, 6:28pm

I just fed my family dinner. My husband is doing the dishes. Mia is laughing and making stimmy sounds to an old Sesame Street CD-ROM from the year 2001. Oh, the CD-ROM does not play in our current computer - in fact, we no longer have any of the old Sony Sesame Street CD-ROM computer games. Mia found her old friend Elmo on You Tube and she is watching another person play the games.  She is wearing her evening attire. Black yoga pants and a black T-shirt. She changes into this outfit each day, after wearing her blue jeans (got her into shorts today after weeks of work) and a pink shirt. Pink. Not lavender. She's no dummy. I tried telling her it was "purple pink." No soap.

She's happy.

Gianna is pacing back and forth in the family room near Mia. Always near Mia. This room is open to our kitchen, and my office is a corner office. Corner of the  dining area of our kitchen.  She is holding her iTouch and a blue rubber duckie. In the background are the sounds of running water and clanking pans, NY Channel 4 news, Mia's voice, and Pink Floyd's Breathe - playing behind my log-in screen on Gianna's log-in on my computer (there goes the helicopter sound) as part of a series of  PBS BoohBah videos that have been set to all manner of musical tastes. Miss G loves music. And Pink Floyd.  And Sammla Mammas Manna Mix. And Dimmu Booghir.

She's happy.




Bella is upstairs watching Sesame Street Count With Me seated next to he ooccupational therapy steam roller device in her room.  There is every chance she is naked.

She's happy.

Why am I giving you a blow by blow of my household? My unusual household filled with autism and stims and communication deficits and sleepless nights and 24/7/365 work for Mark and me?  My home full of fear for the future (my 19 year old "graduates this week.) Why?

Because across town, right now, is the wake of a 15 year old cheerleader from our high school. A perky, blonde "perfect" kid from the cheer bow in her hair to her bouncy toes.

She committed suicide in her home last weekend.

She was 15 years old.

There is no perfect kid. Ever. We love our children as they are - we try to help them in every way possible. I do for my girls. You do for your children. And I know that AA's heart-broken parents did for the same for their child.

By Kim Stagliano

I hate to be a Debbie Drowner, but I'm going to send out this reminder that our kids are so terribly vulnerable to death by drowning. There are too many children, from tiny tots to teens, who have lost their lives to a watery grave.

Please share your ideas on safety - do you go to a town pool? Do you have a backyard pool? Does your child wander or bolt?

In 2008 we rented a house in town with an in-ground pool that had a properly securing safety fence around it. Truth be told, it was the best summer of our lives.  What a luxury to have our own pool at our disposal. I did not have to worry about behaviors or even the sudden skinnydipping predicament (cute at home, not so much at the town pool). And the pool became a social tool.  The photo above is from Gianna's 12th birthday party. I invited lots of the girls' typical and autism peers and even my husband's and my friends were eager to join us for a dip. I'd love another home with a pool.

That said, the dangers are so very real for our children.  If your child is at a camp of any sort, or might swim somewhere during Extended School Year programming - please make sure the staff is constantly "eyes on arms length" and fully vigilant. Explain to family members who are not used to our level of alertness that even 1 minute can be the difference between life and death. 

A teen drowned in LA earlier this month.  The first story among the many I anticipate this summer.  Let's all work to prevent DBA - "Drowning By Autism."

Marco.....

Kim Stagliano is Managing Editor of Age of Autism. Her new novel,  House of Cards; A Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.

By Kim Stagliano

Major media including The Washington Post, picked up a story about a study that found ‘Significant’ statistical link between mass murder and autism, brain."

Needless to say, those of us with sons and daughters on the spectrum are appalled, dismayed and angry at the facile reporting.   Adam Lanza, the young man who shot 26 children and school staff just 15 miles north of my home was the focus of the article.  The media, never one to get caught up in details, uses "autism" and "Asperger's" interchangeably, rather like Southerners are known to call carbonated beverages "Coke." Dan Olmsted took a hard look at Lanza's history, his father's own words and based on diagnostic criteria and he reported on Age of Autism:

Here’s the key part: “Adam Lanza was never typical. Born in 1992, he didn’t speak until he was three, and he always understood many more words than he could muster.”

Well, if he didn’t speak until he was three, he didn’t have Asperger’s. Straight from my hefty copy of DSM-IV, retrieved from the box in the garage: “In contrast to Autistic Disorder, there are no clinically significant delays in language (e.g., single words are used by age 2 years, communicative phrases are used by age 3 years).”

It seems that in 2014 autism is either a quirky difference that makes for smart, technically proficient inventors who just have a brain difference or mentally ill killing machines.

Some choice.

Like most bell curves (yes, I took statistics in college) the tails do not wag the bell.

After the Virginia Tech shooting the media picked up the scent of autism and rumors started that Cho was autistic. I immediately wrote a Huffington Post piece called You Can Call Me Angry, Just Don't Call Him Autistic. 

Managing Editor's Note: I'd love to meet AofA readers at the VOR National Conference dinner on Sunday, June 8 at the beautiful Hyatt Regency in Washginton DC.  I have the great pleasure of being the dinner speaker. The event spans several days, includes panels, speakers and a chance to engage in Congressional advocacy during the week.  Imagine face to face meetings with your Congressional leaders to tell them what YOUR CHILD will need for a safe and meaningful future - as opposed to what neurodiversity advocates and national agencies who smell M-O-N-E-Y in our kids want.  Learn more and register HERE. Kim

Elk Grove Village, IL

Across the country, tens of thousands of individuals with developmental disabilities, including autism, are suffering due to lack of access to appropriate care and services.

The numbers representing present and future need are alarming.  Almost all states have waitlists for accessing adult support services, with more than 280,000 individuals with developmental disabilities, including autism, going without necessary care in 2013.  Almost one million individuals with developmental disabilities, including autism, are still living with caregivers over the age of 60.  In the next decade, over 800,000 on the autism spectrum will transition to adulthood.

So where do we go from here?

For 30 years, VOR,  a national nonprofit organization, has advocated for high quality care and human rights for people with intellectual and developmental disabilities.  VOR is the only national organization calling into question the impact of decades-long state and federal deinstitutionalization that continues in earnest, especially in light of current unmet needs already in the community.

“Individuals with profound intellectual and developmental disabilities or autism have significant care needs,” Julie Huso, Executive Director commented. “The impact of going without adequate care is felt equally by the individuals and their family caregivers.”

In 2013, there were 280,000 people with developmental disabilities, including autism, who were waiting for services.  VOR has carried these concerns to all levels of government, including the White House and Congress, and has recently joined forces with a group calling itself the Coalition of Community Choice, a national grassroots collaboration of persons with disabilities, their families and friends, disability rights advocates, professionals, educators, and housing and services providers to advance the principle that community can be experienced in all residential settings.  VOR believes that true community is a concept not limited to any particular residential settings.

Note: I wrote this post for HuffPo and they declined it. Writers don't often share their rejections, but it seems appropriate to mention that fact. This post was meant to educate and, I hope, move us forward. April stunk.

By Kim Stagliano

April was autism action/awareness month. It's a designation that doesn't change much of anything except that famous landmarks glow in a blue light and proclamations are made about awareness around the world. There are hot tempers and strong opinions on just about every aspect of autism from whether it's a disability or not, to schooling, to medications and treatment, to the need for special inclusion events like movies and amusement park passes.

And then there was.... "The Hate Debate."

On April 15, Megan, a degreed-lawyer-naturopath-military-wife-of-a-physician-power-yoga-instructor-mother-to-4-blogger who runs the site LivingWhole.org summed up the bullying in a post she called, "The Hate Debate."

I am sick of it - this vaccination debate. My convictions not to vaccinate have been firm for six years now and I was comfortable living a low-profile life and letting other more notable activists carry the torch; and then I started seeing misleading t.v. interviews, news stories, and backlash against parents and unvaccinated children. I saw reputable medical professionals get crucified and reputations destroyed for questioning the mainstream norm. This isn't a vaccination debate, it's a hate debate, so let's call it what it is. And when it got personal, I got involved.

She had to pull down her site for a short period, to the delight of those who were bullying her. Here are just two comments she received - along with vicious threats that arrived quite literally on her doorstep if you can image the audacity and sheer terror of that.

"Please kill yourself. Thank you for misleading people with your carefully thought out bullshit.

Kill yourself immediately if you believe anything you wrote about vaccinations. "You are selfish, ignorant, foolish and myopic. You're an unfit parent and a menance [sic] to society."

A similar hate debate took place over a Chili's Restaurant fundraising campaign to benefit The National Autism Association, an organization whose Big Red Safety Box is helping to keep people with autism safe from death by wandering and bring peace of mind to beleaguered families. A vociferous social media campaign castigating NAA by people who likely hadn't the foggiest idea about their efforts on behalf of families facing the challenges of autism lead to Chili's cancelling the fundraising effort just 24 hours before the start date.

Now everyone out there knows that social media makes people forget their manners and push the boundaries of decorum but the carnage-by-comment assault attack on autism that seems to have gripped the nation is beyond anything I've seen in my 10+ years writing.

By Kim Stagliano

My God... In this week after Passover and Easter, "'Eloi, Eloi, lema sabachthani?" 

Please take a look at this petition to SHUT DOWN the barbaric Rotenberg Center in Massachusetts.  This "school" (and Abu Graib is a summer camp) uses electric shock as a behavioral treatment. Painful, aversive, out of date, last ditch, aw who cares it's just mentally disturbed kids and autistic kids who are probably in the last place on earth that will take them electric shock.   Yes, Massachusetts (which happens to be my homestate) the ultra-liberal blue state where anything goes - except medical rights and freedom and respect and decency for children and their families.   The state where Justina Pelletier languishes in DCF after having been taken from her family by Children's of Boston.  

Here is the start of the petition by a former teacher's aide at Rotenberg.  As an aside, my Dad, now 91 years of age, played golf with Judge Ernie Rotenberg back in the 60s and 70s. And rumor has it, the Judge was a lot like Judge Smails - he used a "footwedge" to boost his scores.  His wife Gladys died just last year, her service held at the Synagogue in the town where I grew up.  The dichotomy, or irony (which seems too glib a word to suffice here) of this school having been named after a Jewish man - a school that tortures and maims as viciously as any concentration camp as far as I can see, is as vivid as the burns on the boy's body.

That any student remains there speaks to the tragedy of mental health and autism care for teens and children. There are so few good choices. NO ONE KNOWS WHAT TO DO! For the Alex Spourdalakis's, the Sky Walker's, kids who need care and medical treatment - not torture, the Rotenberg Center should be closed down for cheating children out of their very lives - it is barbaric and inhumane.  NOW. 

The video is disturbing, please be aware.  Kim

I deeply regret having worked as a teacher’s assistant at The Judge Rotenberg Center (JRC), a “special needs school” in Canton, Massachusetts, where children and teenagers with autism and other disabilities are administered electric shocks as a means of controlling their behaviors.  

I joined the JRC because I thought I would be helping these special needs students.  But it became clear that this practice was painful, traumatic, and more harmful than good. I never would have used these "GED" shock devices had JRC not told me and other staff in training that the GEDs had been “approved by the FDA”.  When asking an administrator about the severe thick and bloodied scabby injuries all over students' bodies, I was told that these machines had been tested and were “proven to be safe” as necessary to get FDA approval.  I did not know until 2012 that this was a lie!