Tag Archives: autism awareness

Dear Autism “Community”: Do You HEAR Yourselves?

seinfeldThese are REAL comments on Autism Daddy’s facebook page concerning Jerry Seinfeld’s recent disclosure that he might be on the autism spectrum:

Melissa P: “As the mother of a very high functioning Aspie, I was very offended by Jerry Seinfeld’s self diagnosis. I saw his stand up once and saw beneath the veneer of his comedy an arrogant, elitist prick. His “social awkwardness” comes from his elitist viewpoint atop his magic money empire which prevents him from connecting with an “average” person. It doesn’t make him an Aspie, it makes him an a-hole.”

Karen D: “…gee what I wouldn’t give to have my essentially non-verbal son have a hit tv show for over a decade, make millions, talk casually on Letterman and Leno, do stand up. It’s like night and day, cookies and carrots, hard and easy…yeah they have things in common but they are so far from each other it’s hard to see their commonality. An when you’re struggling it’s hard to empathsize with a very successful, rich, funny star saying he’s got troubles too.”

Jessi F: “I generally take issue with adults who self-diagnose – not saying adult dx doesn’t happen, but go to a professional & then I’ll believe you. Seeing anyone quirky/different as being on the spectrum annoys the everloving shit out of me (my kids are relatively high-functioning, but have OCD, anxiety, and major depression to go with. Fun times.)”

Shannon N: “I’m really conflicted about this, because I think many people can see particular traits that are present in autism in themselves even if neurotypical. Maybe there’s more to it than what he said in the interview. It just seems that lately anyone that finds themselves to be a bit quirky, or not extroverted, is identifying as autistic.”

Just out of curiosity, how many of the people who form an opinion like these above have spent any real amount of time with the folks they are judging? And exactly what data are they using to make these judgments? Also, when they are out in public with their child with autism who might be having a meltdown, or if they are themselves having a meltdown, do they whip out the psych eval that proves such to show passersby? WHO ARE YOU SO ANGRY WITH??? It is not, and never has been, a competition along the spectrum of autism. Yet that’s a complete lie because it actually has always been a competition because no matter who you are as an individual with autism, you are labeled as either “high-functioning”, “low-functioning”, “self-diagnosed”, “non-verbal”, or some other twist of vocabulary to make sure you are put in your place. Why? God only knows. It serves NO PURPOSE whatsoever. In fact, not only does it create inappropriate limitations on some, but it creates inappropriate expectations on others. It creates crippling animosity between the “levels of functioning” on the spectrum, especially between parents and caregivers. And here, in the case of Mr. Seinfeld, it paints a contradictory portrait of what autism for a man “like him” should look like. When convenient, parents and caregivers, and self-advocates will use this common description of autism: “There is no one autism.” However, they quickly rescind that philosophy when met with a high-functioning celebrity with autism – then the adage simply doesn’t apply. Out yourself as gay? Sure. No one claims that without being brave as hell. You’re going to face either abject persecution from family, friends and society, or if you’re extremely blessed you’ll only live with the daily discrimination our society as a whole still dishes out. Got cancer? No one jokes about having cancer so you’re likely telling the truth. No one starts a judgy facebook thread on whether or not you really have cancer and certainly no one gets into public arguments about whether or not your one malignant mole is as scary as full-on liver cancer. It’s CANCER. Everyone freaks out and offers to bring you a meal. BUT AUTISM OR ASPERGERS???? HOLD UP. Everyone suddenly decides to take to the streets and online minefields to debate that shit and ignore that you just opened your soul for the world to see. Statements like: “Everyone is on the spectrum somewhere, we’re all a little quirky. No big deal.” Why should they treat you with compassion and empathy? Why acknowledge that you have come forward displaying what you believe or know for certain is a lifelong condition of your very being? Apparently because you chose this and the autism community simply disagrees. This is AUTISM. It was there from birth. Imagine the host of feelings for an adult to finally find the answers they have been searching a lifetime for! When I discovered my autism, first through self-diagnosis because HELLO, you have to start somewhere – I was relieved and thrilled to have answers!  I’m not 3 or 6 or 17 years old.  I’m an adult and I had to figure it out for myself.  Then I had to decide if I wanted a formal diagnosis.  But let’s be honest here – Mr. Seinfeld is pretty damn smart.  He knows a lot of smart people.  Are we really going to hold him to a clinical diagnosis to “claim” him as one of our own?  Do you question his ability or motive at 60 years old to understand the diagnosis he is seeking?  Do you really think this man went public on the evening news without some serious discussions? John Elder Robison is a dear man, respected member of the autism community and was “casually” diagnosed by a physician friend as an adult. He didn’t seek a formal diagnosis right away – he didn’t have to! Only later did he do so in the course of participating in clinical research. So why do we judge one and not another??? Is it because this is a career comedian who made a ton of money?  Is this the disenfranchised autism “community” displaying its jealousy of “high-functioning”? Of fame and fortune?  Why are we not throwing the entire weight and love and support of the autism community towards Mr. Seinfeld’s brave announcement AND TO EVERY INDIVIDUAL WHO SEEKS COMMUNITY AS AN AUTISTIC? And we still wonder why this “community” of autism cannot pull itself together and get anything done. It’s so important that we set the example for ALL individuals who think they may be on the spectrum that WE WILL WELCOME THEM!!!! My sincerest blessings to Mr. Seinfeld for his bravery on this journey to self-discovery. My prayers to all individuals who struggle to be accepted and supported on their journeys, whether children or adults, whether diagnosed or in the process of discovering their autistic roots. You are amazing and you are loved. And there *is* a community waiting for you that will accept you and love you for everything you are. Never give up. ***Friendly reminder, Folks – Please allow time for your comment to appear unless it qualifies as hurtful, hateful, contains inappropriate language, etc. This is a place of acceptance and safety. While I welcome opposing viewpoints, we all deserve respect. Thank you.***


Manchester Schools Refuse to Maintain Transportation Monitor. Oh. And Chicken Bones.

If you haven’t been around for the fun, please read THIS, THIS, and THIS.

Cheers.


Military Families Find HOPE Aboard USS Intrepid

(Photo courtesy of Autism Speaks and Photo-NYC.com)

New York – On Saturday, March 31, Autism Speaks honored military families living with autism aboard the USS Intrepid Sea, Air and Space Museum.  My head is still spinning and I am still processing the HOPE I stumbled upon that day.  I have so much to tell you and I want to share this HOPE with you.

Before I go any further, if you don’t know me, please read about my journey as a Late Bloomer.  I feel it is so important that people understand that I have done nothing extraordinary in the last two years.  I simply spoke up and reached out to people who can help – people who should help – and I have had high expectations of them.  I also learned “No” is an unacceptable answer, especially from leaders in government that we elect and contribute to their salaries.  I have learned that being positive and confident about the right thing to do is contagious.  Even politicians want better expected of them.  Anger and bitterness do not get the job done.  More importantly than anything else, I have learned to listen, too.  In reciprocal communication with legislators, other military families, military leadership and fellow members of the autism community, I have become a better person and learned so much about working as a team.  It has allowed me to participate in opportunities that otherwise would have been far out of my reach as that Late Bloomer.

Aboard Intrepid on Saturday, I had the opportunity to speak with Mr. Michael Strautmanis, Deputy Assistant to President Obama and father to an autistic child.  He was sincere and he was listening.  I am fairly certain that no less than four times I told him his presence there that day meant HOPE to our military families.  I am pretty sure I was close to crossing a line when I winked at him saying, “Now you go back to DC, Sir, and tell your boss we need this.”

Handing Mr. Strautmanis a letter on behalf of military families. (Photo courtesy of Autism Speaks and Photo-NYC.com)

I had several more conversations with Congressman John Larson [D-CT], Sponsor of HR.2288, as well as Bob and Suzanne Wright, cofounders of Autism Speaks.  These individuals are serious, people.  This is a no-more-messing-around situation.  The new CDC numbers of 1:88 are not new to the military but they are certainly helping to wake everyone else up.  The unique struggles our military families face, admittedly, are so very complicated.  It isn’t until recently that our stories have been brought to light and truly understood.  It’s hard enough for us to keep up with the acronyms, imagine these civilians getting a crash course in military lingo while also hearing about the seven circles of hell we navigate through just to get to ECHO.  We must keep sharing our stories and spelling out those acronyms.

 

From left to right: President of Autism Speaks Mark Roithmayr, Deputy Assistant to President Obama Michael Strautmanis, Military Spouse Rachel Kenyon, Congressman John Larson [D-CT], retired NASA Astronaut Jeffrey Alan Hoffman, Cofounders of Autism Speaks Bob and Suzanne Wright, and Intrepid Museum President Susan Marenoff-Zausner.

(Photo courtesy of Autism Speaks and Photo-NYC.com)

The presentation aboard Intrepid for military families was emceed by Bob Woodruff of ABC News, a hearty supporter of veterans and Wounded Warriors.  Mr. Strautmanis, Congressman Larson and Bob and Suzanne Wright spoke of the undeniable responsibility our nation has to care for our troops and their families.  Most notably, Mr. Wright spoke of personally calling ECHO to get answers.  He spoke of the frustration when administration at ECHO told him they were unaware of families having trouble accessing autism care.  This man had taken the time to walk in my shoes.  That got my attention and earned my respect.  Marine spouse and advocate Karen Driscoll shared a powerful video highlighting the personal toll on our military families who cannot access treatments.  She also urged leaders to take this important message back with them to Washington, D.C., and implored them to take action.  The heartbreak our military families live when denied the treatments our children with autism need and deserve was exuded by each speaker.

What I heard this day was a clear and united message to our military families.  The cavalry is mounting up and on its way.  But we must keep communicating.  We must keep ourselves visible and hopeful.  We must remain positive.  Anger will get us nowhere.  It has to be a team effort and victory will require teaming up with both sides of the political aisle and every side of the autism debate.  It is not vaccine versus genetics here.  It is not research versus outreach.  With 1:88 there is room enough for everyone to sit at the table and work together.

For military families, right now is the time to act.  We have the federal legislation in place and we have the momentum to get it passed.  But we need unity and a collective voice speaking up and being heard or else we will fail this mission entirely.  HR.2288 – Caring for Military Kids with Autism Act makes the recommended amount of medically prescribed autism treatments available to all military families.  It is the help we need right now.  We cannot wait any longer and we cannot wait for someone else to speak up on our behalf.  We need to own it.  We need to fix it.

I leave you with this well-known story:

There was a man that lived by the river.  He heard a radio report that the river was going to rush up and flood the town.  All the residents should evacuate their homes.  But the man said, “I’m religious.  I pray.  God loves me.  God will save me.”  The waters rose up.  A guy in a row boat came along and he shouted, “Hey, hey you!  You in there.  The town is flooding.  Let me take you to safety.”  But the man shouted back, “I’m religious.  I pray.  God loves me.  God will save me.”  A helicopter was hovering overhead.  A  guy with a megaphone shouted, “Hey you, you down there.  The town is flooding.  Let me drop this ladder and I’ll take you to safety.”  But the man shouted back that he was religious, that he prayed, that God loved him and that God will take him to safety.  Well, the man drowned.  Standing at the gates of St. Peter, he demanded an audience with God.  “Lord,” he said, “I’m a religious man, I pray.  I thought you loved me.  Why did this happen?”  God said, “I sent you a radio report, a helicopter, and a guy in a rowboat.  What the hell are you doing here?”

Intrepid is no rowboat, but you get the idea.

Get on it.  Get involved.  Contact your legislator NOW.  Before we all miss the boat.

 


April is Autism Awareness Month AND Month of the Military Child

I’m over at the Autism Speaks Official Blog today talking about the complex issues facing access to autism care for military families and why HR2288 – Caring for Military Kids with Autism Act is so critical.  April is coming and there are so many ways to get involved in spreading awareness whether blue lights on your house or simply starting a conversation with someone and sharing what autism means for you and your family. 

“April is not only Autism Awareness Month, it’s the Month of the Military Child.  As a military spouse and mother to a child with autism, I’m here to spread some multidimensional awareness by exploring how these two pieces of the puzzle fit together, or rather how they do not.  I apologize in advance for the absurd amount of acronyms, but bear with me as I try my very best to demystify the whole autism-military thing.”

For the entire article, please find me on Autism Speaks HERE.

And thank you for being a part of this journey with me!

Rachel


Paranormal

This afternoon we experienced a freak episode that was outside of normal.  For us.  But I could not shake the thought of how normal it actually felt.

RM came home off the van from school and we proceeded through the ritual of taking off our shoes, hanging up our coats, washing hands, putting on a new pull-up and getting a fresh cup of water and some crackers.  It’s exactly the same routine every afternoon.  But then we did something way out of the ordinary.  We bundled up and put our sneakers back on and set out on this beautiful day and walked the quarter-mile up to The Boy’s elementary school to greet him and even hang at the playground for a spell.

You know like normal families do.

There were other moms there, too, congregating like moms do at the playground while kids play.  None of the moms was 1:1 chasing their autistic kid.  But here’s the thing – neither was I.

RM has come so far in the last year.  She can maneuver the playground like a pro.  Sure she has some limitations like any other 5-year-old.  But they are height-specific like not reaching the zipline bar, they are no longer limitations of disability.  She giggled.  She watched her peers play.  She smiled at them more than a few times.  She gave chase to her brother.  She was having a grand time.

So was I.

It was so – what is the word?   Normal.

It wasn’t a perfect outing, we had a few hiccups like when RM saw her brother walking toward us (and home) so she panicked.  She did flop on the ground, but she just needed the reassurance that the plan was still set and we really were going to the playground.  She regrouped rather quickly and even said, “Sorry, Mom,” as the three of us took hands and kept on our way up to the schoolyard.

The other moms I chatted it up with I know well enough to know they each have had their own brand of normal.  Not autism-normal, but they have had their own unique journeys with their own kids.  And I appreciate that more than they will ever know.  Because autism-friendly is as much about normal being different for all of us than it is about being the same.

But I sure loved the brand of normal we had this afternoon.


MIB are coming to get me now

Hi.

I am pretty confident I am on a few different ‘Watch Lists’ by now.  But I’m ok with that.  Our military kids are worth it.

So humor me before I am dragged away in the middle of the night by Men in Black with night-vision who drive dark Suburbans with tinted windows.

Sign the White House Petition asking for the Obama Administration to respond to the 1 in 88 military kids with autism who are not getting the care they need.

It would be the best parting gift as I disappear from the face of the earth never to be heard from again.  Please tell my children I love them.

We have 30 days to get 25,000 signatures.  I know we can do this if everyone does their part.  This is not a petition about politics.  It is a petition for EACH & EVERY CHILD that serves alongside his or her brave mom or dad that sacrifices to keep us safe.

Are YOU willing to serve THEM?

Click –> HERE <– to go directly to the official page of We The People petitions to The White House.

Don’t be confused, this is separate from CMKAA.  I’m still working my ass off on seeing that bill pass.  But you see, I don’t like to wait on the ropeline for hours in 4-inch heels when I can sneak into the backstage with a little help from my friends.

Cheers,

Rachel

 

[Ed note: Please know that the only way we can reach 25,000 signatures in such a short time is by everyone sharing with their friends and family and so on because I don’t actually have 24,999 friends to coerce into my sneaky plan.  Don’t forget, this is not political, just the right thing to do. Here’s the actual link that you can copy and paste into your own Facebook, Twitter or email to all your peeps: https://wwws.whitehouse.gov/petitions#!/petition/make-autism-therapies-accessible-all-military-dependents-wautism-tricare-medically-necessary-remove/chcgvKdB ]

 


Why 1 in 88?

Since I began advocating for military kids with autism, the question I am asked most frequently is:  Why are the rates of autism higher for military kids?   

Is it chemical exposure?  Vaccines?  WTF?

The rates are not necessarily higher, my friends.  It’s complicated.

But I will start with the statistic itself and how it came to be.

In 2007, a Marine spouse and mother of a child with autism filed a request under the Freedom of Information Act (FOIA) for data on the number of military dependent children with Autism Spectrum Disorder.

From the period of June 2006 through June 2008, there were a total of 13,243 active duty dependents with autism.  If you take the total number of active duty military dependents and divide by the number of those with an ASD diagnosis you get a simple equation:

1,177,990 active duty dependents / 13,243 active duty dependents with Autism Spectrum Disorder =

1 in 88.

The catch here is that TRICARE required a minimum of three claims for service using an ASD diagnostic code within a 24-month period to be included in the data.  A trip to the ER for a broken leg wouldn’t count even if the injury was incurred because your kid with autism thought he could fly.  In layman’s terms, unless the child with autism was actually receiving appropriate autism treatment being administered via TRICARE, the child was not counted.  I can tell you my own daughter is just one example of those not included in the 1 in 88 because she receives all of her autism therapies at an outplacement school.  (Remember, we are an Active Guard Reserve family and do not live near a military base.)  Can you imagine how many kids are missing in this TRICARE-driven data?

Out of the 13,243 active duty kids with autism only 1,374 were enrolled in the Extended Care Health Option (ECHO).  ECHO is the separate arm of TRICARE that theoretically provides autism services and classifies them as special education rather than medically necessary.  I could go on for days how ECHO is messed up, but the short version is that enrollment requires prior admission into a discriminatory program called Exceptional Family Member Program (EFMP) that identifies your special needs child and is supposed to make sure that the family is only placed at duty stations that have appropriate services and facilities available to the child.  The dirty little secret is that soldiers are reluctant to apply because it has the potential to really screw your military career opportunities.

Now let’s talk dependents of retirees.

The same report listed 8,784 retiree dependents with autism for that time period.  Imagine how many there really are today.  The math starts to get really nutty, but if you attempt to calculate how the retiree dependents contribute to the overall statistic using DoD numbers of retirees, you get an even higher rate of 1 in 67.

Let’s say you serve in the military for twenty years and you are eligible to retire.  You and your eligible dependents will still receive TRICARE standard medical benefits, but your parting gift is the end of ECHO autism services.  That’s right.  Gone.  It doesn’t matter if your child with autism is five or fifteen.  You get nothing.

Did you know that there are now countless ‘retirees’ that didn’t quite make it to twenty years of service and are left without special needs benefits for their dependents?  Why, you ask?  Because there is such a thing as a ‘medical retiree’ – a soldier who is forced to retire due to injury or disease.  They also lose ECHO.  Yes, that means a Wounded Warrior who retires from service with a special needs child loses all special needs services for that child.

So you still want to know the answer to why the rates of autism appear higher than the civilian population?  I don’t have the exact answer.  No one does.  And frankly, I don’t really care right now because right now we have treatments that work – yet our military kids are being denied access to them.

So for the 1 in 88, can we please just throw these kids a bone?  Isn’t autism hard enough?  Aren’t deployments and Mom or Dad being gone for a year while getting shot at kinda sucky?  Why on earth would we provide medical care for our wounded warriors but not our warrior kids?

The Caring for Military Kids with Autism Act (CMKAA) H.R. 2288 makes autism therapies, including Applied Behavior Analysis (ABA), a part of TRICARE standard medical benefits.  It removes the dollar cap and allows for a child to receive the recommended 30-40 hours per week of services.  Most importantly, removing the autism therapies from ECHO means that the services are still available to retiree dependents.

This isn’t rocket science.  It’s simply the right thing to do.

Please show your support for CMKAA by clicking –> HERE <–.

You will be taken directly to an easy-peasy form field that takes less than two minutes to complete.  I have written a sample letter you can cut & paste and your support will go directly to your Representative in Congress.

It’s time, people.

Let’s get it done.  Hooah!

[Ed note: current FOIA requests for TRICARE data is being witheld, but estimated number of both active duty & retiree dependents with autism is now approximately 23,000.]


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