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If you are a headline writer, you are an asshole.

There, I said it.  You may not like it, but it’s true.

Why? Because if you are a headline writer, a craft that goes back to the early days of the printed news, you have contributed to the continual dumbing down of the United States of America.

The recent article by the Washington Post claiming “Study: ‘Significant’ statistical link between mass murder and autism” was a classic example of what newspapers and networks have been more and more guilty of in recent years.  Hitting people with out of context snippets to create interest to drive traffic in the form of clicks or viewers to bring in dollars is what these assholes do.

The problem is that a large chunk of people won’t click through and will simply read the headline – absorbing it as critical information without actually understanding the greater context of the  bigger picture.  Those that DO click through will read the article or watch the video through the lens of the headline – so despite the content saying something completely different, or at least preaching caution, the reader/viewer will not truly understand what they are reading.

We have become a headline nation – why is it that the Right and the Left are so far apart on everything?  They actually are not, but the headline writers have purposely created an environment that feed the angers and insecurities of a struggling nation.

Are we really so far apart on health care? or education? or security? taxes? care for the less fortunate? religious freedom? gay marriage? abortion?  I would argue that the vast majority are much, much closer than people realize.  The problem is that we can’t get past the headlines.  Headline writers throw people into one of two camps – for or against – when the truth is much more subtle.  We have reached a point where we compress everything we believe into 140 measly characters and then shout it out in ALL CAPS.

Nothing, I mean NOTHING that is worth debating should be compressed down to 140 characters (or even 1.400 characters for that matter).  The problem is that we have become lazy readers who would much rather have our country run by  someone we think would be a good drinking buddy instead of someone who is obviously way smarter than we are.

I consider myself to be pretty bright.  I did pretty well in high school and went to a decent college.  I like to think that I’ve got some brains – but there is no way on God’s green Earth that you could convince me that I am intelligent enough to run a country, no less the most powerful nation in the world.  Meanwhile, our leaders have been pushed by these headline writers to dumb themselves down.

In my opinion, these headline writers, particularly the one who wrote the headline for the Washington Post article, are guilty of negligence and any harm perpetrated by a parent on an autistic individual will have to be partially blamed on that particular headline writer.  Why?  Because somewhere out there is a parent who is feeling lost because society still hasn’t fully accepted autistic people.  Wherever this parent is, he or she will read the headline, and in some twisted, sick, evil way will come to the conclusion that he or she will be saving society by hurting their child.  This headline writer should also be found guilty of causing loss of employment of any autistic who doesn’t get a job he or she is qualified for because somewhere in the back of an employers mind will be, “I can’t hire a potential mass murderer”.

John Elder Robinson debunked the “study” showing that the number of people who were known to have autism in the study was about the same percentage as overall society, but I betting that most people who read the original article didn’t pick up on that.

The bottom line is this – I implore you to ignore the headlines when you aren’t willing to read the full article…

…and always remember, headline writers are assholes.

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Today is Brooke’s 11th birthday.

11.

When did that happen?

Yesterday we were blessed to have many of her friends and classmates over for a birthday party that included a planned surprise (check over on diary for the details), live animals (her favorite was the chinchilla), dancing, a piñata, pizza, cake and dough babies.  I think it is safe to say that everybody had a good time.

https://www.youtube.com/watch?v=8TlX7kyXlCY

But even in the midst of all this fun, I was reminded just how different Brooke is from many of her peers.  Watching her throughout the party I was able to see just how far she has come and just how far she still has to go.  I don’t mean in the “to be more like her peers” sense, but more in the “developing an ease with her environment” sense.

Anyway, I was reminded of Autism.

***

Tomorrow is the first day of Autism Awareness Month.  It is a time that many of the big advocacy groups push awareness, fund raising, etc.  Undoubtedly there will be arguments and heated discussions between those who align themselves with the various groups.  As you may or may not know, for a very long time, Jess and I were supporters of Autism Speaks.  Over the course of many years, we walked their walks, we ran their races, we raised a lot of money for them.  Last November I ran my last race with them – the New York City Marathon.

Days later, Suzanne Wright would write those controversial words, essentially marginalizing autistic adults.  It’s her organization.  She can do with it what she sees fit.  Jess and I could no longer support them.  It wasn’t easy to walk away – in fact, I wrote about the first Charity Miles run I took post-speech…a sad, difficult day for me.

I moved on.

But here we are, on the eve of Autism Awareness Month.  I still get emails from Autism Speaks, urging me to “Light It Up Blue!” for awareness.  As much as I want to, I cannot.  I know that Autism Speaks does not own the color blue, but it seems that they have co-opted it and made it their own (along with the puzzle piece).

Autism Awareness Day is the day after tomorrow.  Many people I know and respect will light it up blue.

I cannot.

Instead, I ask you to consider another option.  The whole point of the “Light It Up Blue” campaign was to get people to ask, get people curious, get people aware.  How about instead of vaguely inviting people to ask questions about autism, we instead do so overtly.

***

Autism

Awareness
Acceptance
Support

Love

***

respect the stim

celebrate neurodiversity

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let’s talk about autism

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autism is one word,
but there is no one autism

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nonspeaking does not mean having nothing to say
question what you think  you know about autism

***

These phrases are on T-shirts (click on each phrase to link to the shirt) that Jess designed in response to our older daughter asking what we should do for Autism Awareness Day now that we were no longer affiliated with Autism Speaks.  Initially we were stumped; wearing blue just didn’t seem right anymore – I have even retired the Blue Afro.  I don’t say this often enough about my wife, but I think she is brilliant.

I know that at the time of this posting it is essentially too late to get these shirts for Autism Awareness Day, but I hope you will consider not only purchasing one, but wearing it, not just for the month of April but all year round.  Autism awareness isn’t, shouldn’t be just a day or month out of the year; it should be 365 days a year.

***

As my baby girl turns 11, I ask you to help me…no, scratch that…help my Brooke make “awareness” more than just wearing a color or lighting a bulb…

Challenge your family, friends, acquaintances, yourself on what we know about autism…

Talk about autism…talk about the many autisms…

Help Brooke turn awareness into acceptance, support, respect of differences, but most importantly, love.

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Powerless

I can usually see it coming.

The tears, the despair, the pain.

I try to redirect, distract, anything.

But nothing I do can ever stem the tide.

The tears come.

The despair comes.

The pain overwhelms.

Is it autism, hormones, something else?

All I can do is hold you in my arms, powerless, until the wave passes.

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Life Out of Focus 001

Parenting can be tough…any kind of parenting.  We worry about their safety, their development, their…well, everything.  When I look at Katie I worry, but I know that it’s the same worry that every loving mom or dad feels for their kiddo.

But for those of us with special needs kids, sometimes some moments can be especially hard.  The other day while walking Brooke to school, we fell in behind a couple of girls in her grade.  They were chatting away about this and that.  One turned to ask why I was wearing shorts while it was snowing and so cold.  I laughed.  Meanwhile Brooke was running through a few of her morning scripts.  The girls went back to their conversation and Brooke continued with he scripts.

That’s when it really hit me (for like the millionth time) just how big the gap between Brooke and her classmates is and, even harder to take, the fact that there was no exchange whatsoever between these two girls and my daughter…not a “hey”, not a “hi”, not even a nod of acknowledgement.  One of the girls had had a few play dates with Brooke over the years, and is one of the nicer, sweeter kids in her grade, but on that day there was nothing.  It wasn’t intentional or mean-spirited; it wasn’t an active blindness, but it was a blindness nonetheless.  It was as if she and her friend didn’t see Brooke at all.

Brooke herself didn’t seem to notice or care; she simply pushed on with her morning scripts.  I, on the other hand, was devastated.

With Middle School looming not so far away, and then High School and beyond, I am having a harder and harder time imagining what Brooke’s adult life will be like.  I used to be able to see it.  It was as clear as HD TV in my mind; but with each passing year, month, week, day…the picture loses a little focus and what I see in my mind becomes a little more foggy, a little more murky, a little more unclear.

I did find some hope this past weekend.  I was lucky enough to be invited to a dinner of young autistic adults.  Some were more talkative than others.  I chatted with several people on varying topics.  Most importantly though, Brooke seemed comfortable with the people there.  They all acknowledged her presence – they all saw her (and she saw them).

So as cloudy and as murky as my images of the future may be, it is comforting to know that out there in the real world are autistic people who support each other, cheer for each other, but most importantly, see each other.  As long as I know that Brooke will have that when she grows up, I can live with the picture in my head being a bit out of focus.

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I went out for a run this morning.  5 miles, 39 minutes on the nose.  I went out with no particular plan, but I eventually found myself at the local high school track.  While there, for no apparent reason, I decided to do a couple of Fartleks at 5 minutes a piece, averaging at about a 6:20 pace.  The run itself really is nothing to write about; it is rather how my run started that has me sad.

For over the past year I have been using the Charity Miles App for almost every run I do outside.

It is ingrained into my routine – step outside, put in earbuds, start my playlist, start the Charity Miles App, swipe to the Autism Speaks page, hit go, run.  For almost every single run over the past year and a half, this has been my routine, whether it be a training run, a fun run or a race.

The same thing, over and over.

Every run was inspired because I knew every extra mile was a little extra money going to Autism Speaks…every extra stride was money being spent on awareness…every step was improving the lives of autistics and their families…

With the family out on various errands and activities, I decided I needed to go for a run.  I went through my routine – step outside, put in earbuds, start my playlist, start the Charity Miles App, swipe to the Autism Speaks page, hit g…

I stopped.

I thought of Suzanne Wright’s call to action.

I stared at my screen.

I thought of Suzanne broadly painting every family with autism as lost.

I sighed.

I thought of Suzanne making it clear that their focus was on children only.

My thumb hovered over the start button…wavering just so.

I thought of the countless autistic adults who are being left behind by Suzanne Wright’s call to action.

I sighed and looked away, hanging my head.

I thought of the fact that Brooke is only a handful of years away from being an adult.

Sadness overcame me as I realized I just couldn’t bring myself to pressing start.

I swiped through the other very worthy charities that Charity Miles has teamed up with.  I finally settled on Achilles International, an inspiring group that helps disabled athletes compete in events like the New York City Marathon.  Although I did not cry outwardly, I was doing so on the inside.

Image

…feeling lost and sad after 5 miles…

I am sad.

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There is a certain freedom I feel when I run – the rhythmic beat of my feet, the wind in my hair, the straining of my muscles and lungs, all contribute to a feeling that I am free to go, at least for a short while, wherever my feet may take me.  For a while, running served solely as my version of therapy.  Along with the everyday struggles we all experience in life, our family also has an autism diagnosis.  I will readily admit I struggled with the concept that my baby girl was not going to lead the life I had imagined for her.  It took me some time to adjust my way of thinking…evolve, if you will.  Initially running gave me an outlet, a place where I could funnel all my frustration and anger and return physically spent but mentally refreshed and recharged.  It wasn’t long thereafter that I realized that I could use my running, the activity that had given so much to me over the course of a year or two, and use it to help my daughter and those like her.  Running would not only help me deal with my daily struggles with my daughter’s autism diagnosis, it would help make the world a better place for her.

In the very beginning of our family’s journey with autism, my first thoughts were focused on a cure.  I was scared, not for me, but for my baby.  How on God’s green Earth was she ever going to make it without being cured of this…this…thing?  My initial reaction to Brooke’s diagnosis was because there was so little out there in the way of awareness and accommodation.  For months I would cry when nobody was looking, whether it was in the bathroom in the middle of the night or during the day when I was home alone.

Eventually I came to understand that what was best for my baby was autism awareness.  What would a cure mean anyway?  Who would I be left with?  Through our initial interactions with Autism Speaks, I became enamored with their awareness campaign and their dogged pursuit of health insurance reform on a state by state basis. In 2010 I began running for Autism Speaks in support of these two things, knowing that awareness and health insurance coverage for autistics would make my daughter’s life easier, better, more accessible.

Since Fall of 2010 I have run three New York City Marathons, two Boston 13.1 Half Marathons, one 100 Mile Ultra-Marathon and streaked 167 straight days while using the Charity Miles App, raising thousands of dollars, all in support of Autism Speaks because I believe in awareness and I believe in health care coverage for autistic people.

Awareness leads to understanding which in turn leads to compassion and empathy which hopefully evolves into acceptance and inclusion.  Health care coverage means families worry less and have more time to focus on what is most important – their family.

Suzanne Wright has painted me into a corner.  She has made it clear that her focus is on children and on a cure.  She has chosen to ignore self-advocates and the whole of adult autistics.  I understand that the autism she and her family experiences may be different than that of mine.  I even understand why some families seek a cure – I was one of those people once upon a time.  There’s a reason why they seek it, and for some, it has nothing to do with autism and more to do with how society, and certain advocacy groups, views autistic people – there is a difference.

Some day, Brooke will be an adult.  She will still be autistic.  My hope is that she will be able to advocate for herself and others like her if she so chooses.  I hope that people will listen to her just as intently then as they do now.

Suzanne Wright has painted me into  a corner because in her plan, there will soon be no room for Brooke; there will be no place for her in Suzanne’s world view.  Why does this matter?  Because Autism Speaks has the biggest platform, the loudest voice and the most money.

Throw me a bone, Suzanne.  Tell me you understand that there is more than just one autism.  Tell me that you understand that our children will grow up to be adults.  I know many parents mourn the child they thought they were going to raise.  Honestly though, how many parents, of any children, actually end up raising the kids they imagined they would have. 

There are times, Suzanne, where I and my family feel lost.  That doesn’t mean we are lost.  There is a huge, HUGE difference.  Throw me a bone, Suzanne.  Tell me that the opinions of autistic adults, no matter how they communicate, matter.  Tell me that you’ve gone back over your last op-ed piece and realize that your words were too harsh, too exclusive, too narrow.  Tell me you want John Robison back and that you promise to add several more autistic adults to your board so that you can better direct what it is that Autism Speaks stands for.  It’s right there in the name, Suzanne.  Autism Speaks.  Please, throw me a bone.

Running is where I find freedom – it is a joyful experience for me.  You can see it here after 26.2 miles of spreading autism awareness.

...after 26.2 miles of spreading awareness...

The New York City Marathon 2013…after 26.2 miles of spreading awareness…

Where does that energy come from?  My daughter…my autistic daughter who will someday be an autistic adult.  Someone who is only about 10 years away from not fitting into your model anymore.

What am I supposed to do Suzanne?  What am I supposed to do?  Throw me a bone, please, because you’ve painted me into a corner.

I leave you with this thought that came mind this morning:

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Oreo-Cookies-And-Milk-e1368646124688

I have a friend, MK.  He doesn’t know it, but I often call him my reality check.  I call him this because very often, when I write something without fully thinking it through (which is most of the time), he is there to intelligently present either an opposing view or even better put, a wider, more global view.  I’ve thought of him over the past several weeks as I’ve watched several friends write posts on Facebook that have essentially said, “if you eat processed food, you will die!”  While I fully encourage the concept of healthful eating, and I also believe that eating solely processed, packaged foods is not good for your long term health, I have trouble with statements like these.  They fit right in with the “worried about the cost of organic eating?  how about the cost of getting cancer? Now THAT’s expensive!”  I can’t tell you how many friends have posted that one.  The issue I take with statements like these is two-fold:

1.  Making an absolute statement like, “eating that Oreo will give you cancer, make you obese, turn you into an addict and give you diabetes” is very much like handing out “You’re Fat” notes on Halloween to kids you perceive as fat.  It’s not bullying per se, but it is still meant to make the Oreo eater feel guilt and embarrassment.  It’s not nearly as brutal nor as clumsy, but it still paints with broad brush strokes that reveal only a surface understanding of the more detailed biological mechanisms.  It is just as incomplete and can be damaging to those who blindly follow.  Let’s be clear, eating an Oreo is not going to give you cancer or diabetes or make you obese.  In fact, eating a whole package of Oreo Cookies will do none of those things either.  What “eating Oreos will make you obese, give you diabetes, turn you into an addict and kill you with cancer” lacks is the second half of a statement, something along the lines of “if that is all you eat” or “if you eat a whole package every day for months and years on end.”  There is nothing wrong with occasionally enjoying four or five Oreo cookies smashed at the bottom of a glass of whole milk…just don’t make a regular habit of it.  The phrase sugar addiction will often come into play in these discussions – the argument being that sugar is more addictive than cocaine or morphine.  Sugar addiction IS real, but again, the second half of the complete thought is almost always left off…for someThere have been studies that show sugar addiction is real in rats, and to be honest, even though there may not be specific scientific studies that show the same in humans, the unscientific (albeit occasionally misleading) eyeball test tells us a different story.  That being said, not everyone is predisposed to sugar addiction or even the side effects of sugar intake – that is something that many “experts” will either forget to mention or don’t know or even worse, willfully omit.

2.  Organic and fresh food is more expensive.  It just is, there is no way around that.  But to try to appeal to people through the “well imagine how much cancer is gonna cost you when you get it eating all that cheap, packaged inorganic crap” doesn’t take into consideration the fact that A. not all people actually have access to organic food (heck, some people in this country don’t even have easy access to fresh veggies and fruits – see Detroit) and B. some people simply can’t afford to buy all organic all the time.  For some people it becomes a choice of eating and going to bed with a full belly or eating a lot less and going to bed hungry.  I can’t claim to know what the numbers are but I’m pretty sure that constant hunger doesn’t do the brain or the prospects of longevity any favors.  What’s the cost of an underdeveloped intellect due to near starving conditions?  What’s the cost of growing up with a weak body because you couldn’t get enough calories into it due to an insistence on buying only organic?

Now don’t get me wrong.  If you CAN eat fresh veggies and fruits, and you CAN afford to buy organic, you probably should – the less chemicals and fewer packaged foods we put into our bodies the better.  But you have to balance that with a little common sense.  Our bodies are incredible biological machines.  Our cells turnover every 7 to 10 years.  Our bodies do a fantastic, albeit not perfect, job of cleaning out the waste.  Some Oreo Cookies and Milk here or some McDonald’s there or a few Snickers bars at Halloween or feeding your kids some prepared chicken nuggets now and again are not going to kill you or them, make either of you fat or cause cancer.  Occasional treats, if truly treated as treats you have occasionally, can actually be good for you mentally, and we all know that our mental health is just as, if not more, important as our physical health.

You do what you can with the budget and resources you have available.

Ultimately I believe it comes down to moderation.  If you eat a healthful diet in general, don’t let the internet health “gurus” and “experts” out there make you feel bad about hitting Burger King on a road trip or jamming a few candy bars after a big race.  Again, just don’t make it a regular habit.   I’ll admit right now, I swiped a mini Kit Kat, a mini Baby Ruth and a mini Almond Joy from my daughter’s Halloween bag to have as a snack while I wrote this blog post.  They were tasty but honestly, they will probably be the last candy of any kind I eat before Thanksgiving.  It’s not because I have some incredible will power.   I’m not fighting some urge to have chocolate.  I simply don’t crave it, and having it every now and again never changes that.

As my father has always told me, “everything in moderation” remembering of course that moderation will not work for some.

The bottom line for me is that those who write, tweet, or blog about health and fitness issues need to be careful with the size of the brushes with which they paint.  If there is one thing having an autistic daughter has taught me it is that we are all on a spectrum, and what may work for some may have the exact opposite effect on others.  Blanket statements rarely hold up under scrutiny because we are not carbon copies of each other.

We are all different.

***The one caveat I will put here is this – if you know that you have an addictive personality, or have problems with self-control, then it is probably good to avoid the cookies or the fast food altogether or at the very least keep them out of your home so you are not regularly tempted by them.  You have to know yourself – working with your strengths, protecting yourself from your weaknesses. 

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