So I started this post in the morning.

I’m sitting at my desk frustrated and discouraged and self-loathing after an especially difficult weekend and one of those literally-drag-the-kid-to-school mornings.

So I titled the piece “Losing to Autism.”

Because lately that’s what I’ve been feeling like.

I’m not working hard enough. I’ve become too comfortable with where he’s progressed. I’ve been increasingly more likely to allow him to watch TV or play Wii or even read so that I can focus on my own projects.

All along trying not to face the fact that activities like those that at one time had some therapeutic value when used strategically have now become nothing more than a replacement for what was once spinning in circles and head-standing.

Yet I give in just one more time to his millionth-of-the-day plea for Wii and swallow my failings deep into my gut where I keep all those behaviors and character traits that if I happen to see in the mirror make me look like a total loser.

“Sure.” I finally say… because I’m tired.

But of course my giving in is nothing more than a lame, selfish attempt at self-medicating and by the next morning as I’m on the verge of a nervous breakdown because his own symptoms are at their worst I have to wonder as Kanye does, “what’s worse, the pain or the hangover.”

Somehow we managed to make it to the classroom this morning thanks to a little help from the iPad (he’s participating in a trial program for iPad intervention).

By evening I’m sitting on the sidelines of baseball practice where a week ago I was hovering over the kid, trying to get him to do anything other than demand his place at bat. Now I’m not only sitting on the sidelines but relishing in sheer joy at the sight of my child lining up, taking his turn, and even playing in the field… all on his own.

Feels like a victory.

But what I’m realizing today is that my son and his disorder have something in common. A superpower that (like all superpowers) has staggering potential if used for good but would be utterly diabolical in the wrong hands.

They are both unyielding.

What I’ve had to realize about Gideon is that you can’t force him to do anything. You can’t manipulate him. You can’t bribe him. You can’t convince him. You can’t reason with him.

You can’t even teach him.

He does only those things that he believes are in his best interest.

Every once in a while though… he humors me. He lets me think that I’m in control, that I’ve taught him or convinced him or proven one thing or another.

And his autism does the same thing.

I’m sitting there at the baseball diamond wondering… what is the key? what is the difference between this morning and this evening?

It is impossible to know what it wants… to be left alone? or engaged? some prodding or a distraction?

And just like that I realize it wants the same thing as Gideon—just to show me who is boss.

So what now?

Do I give up because I can’t win?

Obviously not… I don’t give up life just because I know death is at the end.

I keep convincing, teaching, reasoning and all those other things—even though I fail half the time—because I know that eventually he and it will accept what I’m suggesting just might be in his best interest.

So that the occasion they’re humoring me will grow more and more frequent until the superpower is ripped from the villainous hands of his disorder and fully claimed by his own.

Then… watch out, man.

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Earlier this year there was a bit of a buzz about an article in The Atlantic about Donald Gray Triplett—who in 1943 was the first child to ever be diagnosed as “autistic.”

The article itself (by John Donvan and Caren Zucker) is really fantastic. Even though it is a bit long for a web piece, it is totally worth your time. I love the introductory story where Donald’s talent (in other words—savant capabilities) for math catches the attention of a travelling entertainer who asks if Donald can join him for his travelling show:

whether they spoke this aloud to their guest or not, [there was] the sheer indignity of what Polgar was proposing. Donald’s being odd, his parents could not undo; his being made an oddity of, they could, and would, prevent. The offer was politely but firmly declined.

I really can’t say enough about this article. I haven’t read anything on the topic that I’ve appreciated so much.

But of all the connectedness of an article like this to my own heart’s strings, it is this image that invoked the most emotion.

For even in a photograph you can see his eyes are so piercing that they’re transcendent. Like the eyes of most individuals whom I’ve met with autism—on the rare occasion that they happen to look straight into your own, they’ll see right through into your soul.

After years of practice I’m lucky to now get a chance to look my son in the eye at least once every day and it still gives me butterflies every time.

Luckily it took very little research to discover the man behind this particular lens—Miller Mobley.

Technically there really isn’t anything outstanding about Miller’s work that sets him apart from other photographers in that sphere. However there is a certain indistinguishable quality that makes each photo somewhat magnificent.

I think it is the simplicity. Nothing in the frame that doesn’t absolutely have to be there.

Miller’s work was so great that I thought for sure he’d be they type of photographer too cool or distant or hip or whatever to give any of us mere mortals the time of day.

But I’m so glad I was way wrong.

Turns out Miller (like all my Odorifous subjects) is entirely gracious, humble and cool.

I don’t know if it’s his youth or southern roots or what, but hopefully it’s rooted deeply enough in his character that not even a move to NYC will pound it out of him.

Tell us one of your favorite odors.

One of my favorite odors would have to be the smell of okra being fried.

What is it about that particular smell?

There’s something about that smell that just puts me in a good mood- it makes me think of growing up and going over to my grandparents… and I just love food!

What experience makes you feel alive?

Waking up everyday and realizing that I’m not only doing what I love, but I get to share it all with my best friend and wife… who happens to run my business!

What fears do you have?

I often have fears of not being as successful as I hope to be.

What have you learned about yourself over the past year?

I’ve learned how much anxiety I have about my career and that I just need to be more content with where I am at the present time… I’m working on it.

Are you working on anything cool right now?

I’m currently working on an advertising campaign where I’ve been photographing Alabama musicians. The coolest part about this project is that Gibson Guitars custom made a beautiful guitar in the shape of Alabama specifically for the campaign.

Do you find your creative work a spiritual experience? In what way?

I’m not sure if I consider it a spiritual experience, but I do try and live out the talents that God has given me. I feel like He has blessed me with a gift, and it’s up to me how I use it.

What tunes have you been hooked on lately?

Kings of Leon, Yeasayer, Kanye West, and Kid Cudi

More Miller Mobley

• Miller’s Portfolio Website
• Miller Mobley Photography on Facebook

Check out the entire Odorifous interview series!

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I’ve been involved with the Northwest Michigan Autism Resource Network for the past 4 years.

The tricky part about an autism community/support group is that everyone is so busy with their own kids (babysitters are rarely an option) that meetings are difficult and volunteer involvement has to be spread thin across a lot of people.

I wish I could be involved more, but the least I can do is create some cool designs for ARN from time to time…

(like the logo and the art-show poster and a few other pieces)

This year I got to do this super-fun poster for our first Autism walk fundraiser that features some iconic halloweenie costume characters.

(and for some reason reminds me of that Neil Young lyric “Marlon Brando, Pocahontas and me”)

Help us out!

I’m trying to raise $500 for my Autism Walk team. ARN has been such a great resource to me over the past few years and I would love to help them do more for the NW Michigan community.

If you’ve enjoyed the writing or illustration or whatever on Strong Odors and you’d like to show your appreciation, would you consider supporting us in this event?

Just visit the ARN website to donate via PayPal and mention “team Gideon” in the comments section.

Thanks!!

Join Us

Do you live in or around Traverse City? How about Petoskey or Benzonia or another northwest Michigan town?

Come on out on October 30th and walk for autism! You can download the registration form and support-raising forms on their website.

See you there!

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Joshua asks “Did I turn out to be the son you wanted when I was born? Like, did I meet your expectations?”

First of all I can’t watch those 10 seconds without totally losing it.

Second…

I honestly don’t know what I’d say if my son were to ask me the same question.

If I were completely honest, I’d have to say no.

He’s not at all what I imagined.

In fact I never could have imagined such a child.

But…

He’s the perfect kid for me.

He’s taught me about real compassion and how to love and what it means to be human.

I’m a much better person since he is in my life.

From PBS:

The groundbreaking public radio project StoryCorps will enter into the world of television for the first time with a series of animated shorts that will air on POV later this summer. Q&A is a three-minute film featuring the audio recording of Joshua Littman, a 12-year-old boy with Asperger’s syndrome, interviewing his mother, Sarah. Joshua’s unique questions and Sarah’s loving, unguarded answers reveal a beautiful relationship that reminds us of the best — and the most challenging — parts of being a mother.

Millions of Americans currently listen to StoryCorps award-winning radio broadcasts on NPR’s Morning Edition. By pairing the voices and stories from its radio segments with imaginative new animations, StoryCorps will produce six of its most beloved stories to follow long-form POV documentaries in August and September. Q&A will be broadcast after The Edge of Dreaming.

You can read Sarah’s story of how they ended up on StoryCorps on her blog.

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A couple big news stories in the world of autism have parents frustrated once again.

First, the infamous Dr. Wakefield was stripped of his license by Britain’s medical council, and then later in the week Reuters published an article suggesting that early intervention may not really make a difference when treating children with autism.

Which is in direct contrast to the only one absolute we’ve ever had… that your best hope is to intervene early.

Early. Early. Early.

So parents everywhere are reacting in anger, throwing emotionally charged adjectives in support of their personal intervention strategies, and pediatricians everywhere can be a little more smug once again, repressing those feeling of guilt that had sneaked in after failing to diagnose so many children earlier than they did.

Here’s the thing… these studies must be done. Their results must be published.

Even if I don’t like or agree with their outcomes I have to know that they will eventually have been part of the solution.

And even though I know hundreds of studies are showing contrary results to these (thanks to doctors much more respectable than Wakefield but with very similar discoveries) I have to accept that the media won’t care about them, and I have to accept the real truth.

That none of this really matters.

Because no matter how many studies are released that say “early intervention may not help”…

You still have to intervene as early as you possible can.

And no matter how many news stories say “there’s no proof that immunizations are connected to autism”…

You should still reconsider the risks of immunizations.

And no matter how many reports say “this or that or this other thing may not necessarily help your child”…

You still must do this and that and that other thing.

Because it just might help.

And it’s all you’ve got.

Because the truth is that nobody really knows anything about autism yet.

Where to Begin Finding Autism Answers

• Dr. Wakefield may be kind of nuts, but there are thousands of doctors who can help solve your child’s biological symptoms.
• Good, honest organizations are out there. Check Autism Speaks and Autism Research Institute and Stanley Greenspan.
• Find hope and discover helpful methods in local (or online) family communities (like northwest Michigan’s Autism Resource Network)

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When my kids were finally old enough for LEGOs, I was glad.

Pretty much everything about LEGO is awesome.

What was interesting (though not totally surprising) was how beneficial LEGO play seemed to be for my 6-year-old who has autism.

Interestingly enough, some serious studies are now being done to develop LEGO-based therapy for children with autism.

It makes a lot of sense:

It is engaging

Let’s face it, LEGOs are just plain cool. In contrast to some other activities, It does not require a lot of persuasion from a parent for a child to want to play LEGOs. It is fun, challenging and rewarding. Play-based intervention, like that proposed in Greenspan’s Floortime model requires the therapist/parent to first engage a child in order to allow him/her to open circles of communication. LEGOs engage a child so naturally that other challenges faced during playtime are more likely to be overcome

Works off his strengths

One really cool thing about LEGO play is that it allows him to work off of his strengths. This automatically makes him more comfortable and willing to conquer more challenges that arise during play. With problem solving and step-by-step directions at the center of kit-building, many children who have autism find themselves in their comfort zones right from the get-go.

Stealthily challenges his weaknesses

Because he has strong skills at the foundation of the activity, he is more balanced psychologically and physically and therefore more likely to participate in behaviors that are often challenging for children with autism like creativity, imaginative play and socialization. I watched my son today pick up his model at various stages of construction and imagine what the half-built project “looks like.”
“A Policeman!” he shouts… which garners a chuckle from me followed by a “What are you laughing at?” in his best baritone policeman voice. To watch such spontaneous imaginative play from him is an amazing and valuable experience.

Develops fine motor skills

One of the challenges often faced by those with Autism or other ASDs is troublesome fine motor skills. Many try to intervene here with coloring/drawing, but our son has never been very interested in coloring (as opposed to his big sister who’s had a pencil attached to her right hand since she was about six months old). I believe that LEGO play has been one activity that is so engaging that he is willing to focus on those fine motor skills and they’ve improved overall as a result. He handles each of those tiny pieces with such dexterity it is hard to imagine just months ago he wouldn’t even grasp a pencil.

Fosters social interaction

For those using LEGO play as actual therapy, one of the primary emphases is on social interaction. One might imagine that a potential negative of an activity like LEGOs for an individual with autism is that he might be so engrossed in solving the puzzle that he would shut out everyone else entirely. Studies have shown otherwise though. When attacking a LEGO set as a group, studies have shown increased self-initiated social contact among those observed not only during therapy sessions, but also spilling over into other social settings as well.

Natural payoff

It is hard to find a more satisfying payoff than a completed LEGO set. With every piece in place and a tangible reward and excited parents, the child can’t help but learn the value of working off his strengths and pushing through the challenges faced along the way. There is no need for manipulated behavioral modification, just organic learning at its best.
I work from my strengths
I meet the challenges along the way
I’m rewarded with a finished product and cheers from loved ones

I could go on and on about the benefits of that payoff.

How a finished set is then a creative toy with unlimited opportunity for pretend play.

and the fact that a big bin of assorted LEGOs has the potential for unlimited creative thinking.

Besides all of that, it is a fun activity that just about any parent can enjoy with just about any kid.

So turn off the TV and go find some LEGOs.

I insist.

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Received an article today about Autism in the workplace.

How certain behavioral skills characteristic of individuals with (high-functioning) autism may make them more adept at particular occupations than the rest of us, and how some new companies and non-profits are providing training to foster the strengths of these individuals by providing specialized training with their unique minds in mind.

At first it seems fantastic.

And to a great deal… it is.

The more our society can continue to recognize those with ASD as real people… valuable people with not only skills to offer our workforce, but with souls and personalities and character… the better.

And these non-profits committed to helping those with ASD find a way to make the most of both their strengths and weaknesses is amazing.

And it shouldn’t come as a surprise that on some level our sons and daughters and brothers and friends who have autism possess something that the rest of us do not.

It’s not always so obvious as super-memory or technical musical ability… but it is something…

Honestly, I’ve never told anyone this… but I’ve wondered if evolution may be at work.

That a century of Americans becoming more and more isolated… focused on screens rather than people… and the increased value we’ve given to analytic prowess over creativity… and the abandoning of real food for processed impostors…

is creating a new breed of humans….

and it isn’t like it happened in X-Men… where we’ve sprouted wings and fangs and razor-blades and laser beams…

but the new humans are incapable of face-to-face interaction… most comfortable alone in an enclosed space… find touch and bright light painful…

and even though they may successfully navigate a complicated gauntlet on the computer… they may not remember to stop and go pee before it is too late.

I know it is crazy, but it is just something I’ve wondered.

And even though that article seems to offer hope… it is really just one more example of NBC (just one representative of the system) trying to convince us that Autism is something that it is not (or isn’t something that it is).

The first clue is how many times they refer to “autistic person.” (It should be “person with autism”… it is a disorder, not a label!)

I don’t know if I’d call it conspiracy… but there are really big forces at work in our country trying to convince us of something.

That autism isn’t so bad…

That immunizations couldn’t possibly have anything to do with it…

That drugs might be the best answer for now…

And as much as I believe in celebrating the unique gifts that many with autism possess and finding strength in their weaknessess…

The fact is that many individuals with autism are not what this article would have you believe them to be…

Many cannot speak.

Many have very little motor skills (fine or gross).

Many are so frustrated with their inability to communicate that they bash their heads into walls in attempts to get a point across.

Many never experience true love.

Because we’ve turned them into a label.

When Chris Tachibana used the word “autistics” I almost puked.

And even though we must embrace their differences…

the most harmful thing we can do is accept that it must be.

Read the msnbc article and share your thoughts below.

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Our son has Autism.

This fall, he transitioned from an ECP (early childhood special ed) classroom to a typical Kindergarten class.

We did so for a variety of reasons, one of which is the theory that Inclusive Education is beneficial for both the special-needs student and his classmates.

PBS released a really great article about this today.

We never really doubted that inclusion is best… the real question is…

are the public schools equipped for inclusive education?

When our son’s Kindergarten teacher already has 23 children to not only maintain, but to guide, teach and grow… how can she be expected to fully serve my son?

It doesn’t matter how great of a teacher you are, that order is just too high…

When everyone knows it is best… why does my wife have to fight through blood, sweat and tears to get him the aid that he is entitled? (any aid… even one without ASD training)

Of course it’s about money… the scary thing is that with Autism rising and school funding on the decline the future looks very bleak for any possibility that the public schools will be able to meet the needs of their communities.

I guess it’s a good thing that I believe in prayer… because I don’t know what else to do from here on out.

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Editorial Note: This original post was written in 2009, during Zev and Justin’s first appearance on The Amazing Race. I’m excited they’re back in 2011 and glad more people are discovering the same hope that I discuss in this article.

Individuals on the Autism Spectrum have never had a voice in the media.

Of course there’s Rain Man (everyone’s first reply when I say “my son has Autism”)…

And the occasional savant on 60 Minutes or something… (which of course results in everyone’s second reply “so is he super good at math or the piano or something?”)

And that is about it.

There’s never been occasion in media where a character with Autism was actually a person… you know what I mean?

That is why I consider this season’s Amazing Race to be groundbreaking…

Because Zev Glassenberg is someone to watch.

As far as I can tell he is the first person ever in popular media to represent individuals with an Autism Spectrum Disorder.

While watching this weeks episode…

I chuckled knowingly when he’s concerned about getting his shoes wet while traveling through knee-deep floods in Vietnam…

and I felt so proud… like he was my own son… when he masterfully shepherded a flock of ducks during one competition…

and gave his jacket to a man who had none…

and my heart cheered when his team came in 2nd at the finish line for that leg of the race…

But the thing that really gets me emotional…

is that he’s got a friend.

a real friend.

Because I know I’m in for a lot of heartbreak over the next decade as I try to watch my son relate to his peers… and none of them will really understand him.

But seeing Zev with his buddy Justin gives me hope… just a little hope… that someday my boy can have a friend that understands him and appreciates him the way I do…

a friend who loves his sense of humor and is humbled by his unselfish spirit and touched by his sweet personality and…..

You can follow Zev and Justin on the race via their webpage (which is mostly twitter status updates of funny stuff Zev says on the show)

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Sometimes I’m surprised to hear parents excited to send their kids back to school… like having them around is a huge pain that they’d just as soon avoid.

I get that kids are a lot of work and they definitely have a way of wearing your nerves quite thin…

I’d still rather be around them most of the time than not…

My son went to his first day of kindergarten this past week.

It was tough enough with our oldest… we cried the whole walk home from dropping her off for the first time.

But this time is different.

Because he has autism, we have no idea what to expect.

Reassurance comes from friends in the form of “Oh, he’ll be OK… do great… etc.”

Which is more than likely true, but not really the issue.

We don’t want him to be OK.

We want him to get the most out of each day.

to excel…

to fly…

Will dropping him in the hands of an overloaded public school teacher give him that opportunity?

Would keeping him home with mom?

Nobody knows, and that’s just the thing… at some point you have to make a decision…

at some point you have to have faith.

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