Pontifications

Autism. F**king Autism.

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Now you may notice that this topic may seem outside of our wheelhouse. It’s not about guns, politics, effective face shooting, or titty bars. But it is a subject that’s near and dear to our hearts. And there are a helluva lot of our readers that have autistic children and relatives, and even more that are curious about the subject. Take a little time today and read through. Mad Duo

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Autism. F**king Autism.
Mad Duo Chris

Regular Breach Bang Clear readers may have noticed pictures of our Founder and Chief Editor David Reeder wearing a Perry the Platypus hat during training and travel. Perhaps you wondered why, in a world of tactical gear, barrel-chested freedom fighters, and cool-guy clothing, Reeder would wear a Perry hat.

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Reeder has a young neighbor who loves Perry the Platypus. Reeder wears the hat everywhere he goes so he can send pictures of it back to his neighbor (the neighbor got him the hat for Christmas a few years back). As I understand it, the neighbor doesn’t just love Perry, he’s nearly obsessed with him. He’s obsessed because he’s autistic, and obsessing about odd things is a common trait among autistic kids. Reeder’s pictures probably bring his autistic neighbor a sense of joy that’s hard for most people to understand.

Unfortunately, I understand it. I have an autistic son. He was born the day I arrived at Firebase Morales-Frazier in Kapisa Province, Afghanistan, at the beginning of my deployment almost seven years ago. Learning to live with his condition has been the biggest challenge of my life, and I never stop worrying about my son’s future. I would rather have lost limbs overseas than see my son struggle with this affliction.

In the last few years I’ve learned far more than I ever wanted to know about autism. In case any B-B-C readers suspect their children are autistic, or just received the diagnosis, I thought I’d share my experience. Hopefully some straight talk helps.

Here’s what autism is… well, fuck, I don’t really know. Generally speaking, it’s a disorder that affects communication, behavior and social interaction. One of the most frustrating things about autism is that it’s so broadly defined, and includes such a huge spectrum of problems. In my son’s case it means he can barely communicate, has behaviors he can’t get under control, and can’t have normal social interactions.

My son talks to a limited degree, understands a lot, and is interactive and affectionate. He’s autistic. A student he attended school with has never spoken a word, barely acknowledges other peoples’ presence, and screams in terror whenever she sees anything she’s not comfortable with. She’s autistic too. Two kids can both be autistic even though they have vastly different problems and skills.

My beautiful, happy, active, autistic little boy.
My beautiful, happy, active, autistic little boy.

Other autistic kids are nearly indistinguishable from typical kids. One child I’m very close to was diagnosed autistic, assessed as being probably retarded, spent years in special programs, and today is in a regular classroom with other kids his age, doing great academically and okay socially. He’s a little quirky, but if you didn’t already know he had a problem you wouldn’t know. His autism diagnosis was removed this year. I’ll tell you more about him later.

So what causes autism? Who knows? I sure as hell don’t. There are theories about genetics and environmental factors, but nothing solid. Some studies suggest older parents, whether it’s the mother or father, are more likely to have autistic kids. That was certainly true in my case; my wife and I were 37 when my youngest was born. An unusually high number of autistic kids have a parent who is an engineer. Some sets of twins, sharing the same parents, same environment and same vaccinations, will have one autistic and one typical kid. One of my best friends is dealing with that.

One theory is that as normal brains develop, some neural pathways naturally die while new ones grow. But with autistic kids, the old pathways never die. That causes sensory overload, and makes people with autism hypersensitive to things that don’t bother typical kids. My son used to freak whenever he heard an electric hand dryer, and we’ve had a lot of accidents because he was terrified of public restrooms. For a long time we had to physically restrain him during haircuts, because he’d fight and scream like he was being tortured. Haircuts aren’t a problem anymore, but cutting his toenails still requires me to brush off old jiu-jitsu skills.

There’s a lot of autism research going on, and we keep hoping for a breakthrough. But the more studies are done, the fewer answers we seem to find. Autism is an unending supply of frustration.

What are the signs of autism? In our case, our son wouldn’t talk and had a lot of odd mannerisms. He’d turn his eyes all the way to one side, then spin the direction he was looking while laughing maniacally. He’d flap his hands near his eyes. When he finally did start talking, he’d repeat the same phrases or sing the same songs for hours or even days (he still does that). He’d take all his clothes off and run around naked. He’d constantly squirm and could almost never sit still. He’d pee in things he thought were fun to pee in, like trash cans and houseplants.

I suspected something was wrong before I even met him. In the pictures my wife emailed me before I came home on leave from Afghanistan, he just looked distressed. We grew more and more concerned as he got older, and by age two were positive something was wrong. If you have a young child, and you have a gut feeling that something’s wrong, don’t ignore it.

What’s it like to have an autistic child? In a word, “frustrating.” A second word would be “confusing.” Very little about an autistic kid makes sense. My son can dress himself, but frequently puts everything on backwards. That’s not done by chance; odds are he’d put clothes on the right way at least half the time. We don’t know why he does that, and no matter how many times we correct him, he puts them on backwards most of the time.

He does plenty of other things we don’t understand. For some reason, he’s fascinated by water. We often walk into the bathroom and find him running water over a pile of random objects in the sink. He’ll flush things just to watch them spin down the drain. He clogged a toilet once, and I couldn’t clear it. I had to buy a new one, then smashed the old toilet open out of frustration and curiosity. He had flushed a small whiteboard eraser.

At a birthday party for another autistic child (parents of autistic kids tend to hang together), the parents had a bounce house, games and a good-sized kiddie pool. The autistic kids all wanted to get in the pool, then one of them accidentally leaned on the flimsy plastic wall, which caused water to pour into the yard. Within seconds they all gathered around one kid, watching him lean on the wall and dump gallons of water into the yard. Several of them were flapping hands, humming or making verbal tics as they watched. For whatever reason, watching the water pour out was the stimulation they wanted.

My son does some amusing things too. He mixes songs like a professional DJ and sings them constantly (lately he’s been singing a combination of Wham’s Wake Me Up Before You Go Go and Come With Me Now by the Kongos). When my wife plays Summer Breeze by Seals and Crofts, my son immediately covers his ears and sings along with the intro. Recently he stopped doing something amusing but potentially dangerous: if his teachers didn’t watch him in the classroom, or we didn’t watch him closely in public, he’d jet because he thought it was funny.

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My son loves belly buttons, and has a tendency to walk up to very attractive, unsuspecting women and lift their shirts. I’d be okay with that, but he occasionally does it to old, fat hairy guys too. He’s playful, and devious. That little devious spark gives us reason to be optimistic about the future, because some autistic kids act more like empty, uninterested shells.

Autistic kids often have two traits that don’t go well together: a drive to get into everything, and a high pain tolerance. One evening my wife walked into our bedroom and started screaming. I ran in, and saw our son lying on our bed with his fingers in his mouth and blood all over his arms and face. He was crying, but in complete silence. He had gouged a chunk of skin from his finger, but didn’t make a sound. We never figured out how he did it, either.

On another night we heard glass shatter. My son ran out of the bathroom quietly sobbing. We went into the bathroom and saw that he had somehow knocked the globe off the bathroom light, and tipped over our toilet paper stand. I thought my son had just gotten scared; then my wife noticed his elbow was swollen and misshapen. We had to take him to the ER, where we found out he had snapped his arm above the elbow. That had to be a horribly excruciating injury, but he never did anything more than cry quietly and tell me “hurry up.”

My son's reaction to snapping his upper arm bone.
My son’s reaction to snapping his upper arm bone.

Being the parent of an autistic kid means never really being able to relax. We never know what he’s going to get into, and we can’t watch him every second. We want him to be independent and give him space, but are always on guard in case of catastrophe.

Don’t get me wrong; there have been major improvements in his condition the last couple years. He talks a lot more than before, understands a lot more, and is much calmer. But he gets into everything, and likes to break things. Sometimes I think he just wants to watch the world burn.

What’s the emotional impact of having an autistic child? I can’t really answer that. I’m often accused of being heartless, especially since I’m a cop and combat vet. But my son’s condition hits me hard.

When something’s wrong with your kid, it’s never far from your mind, and you never get a break from it. As a father, it’s my job to protect my children from harm. But I can’t do anything about this.

I support the family and keep us insured so he can get therapy. I volunteered to go on active duty in the National Guard and spent almost three miserable years doing a staff job I sucked at so we’d have better insurance than what my job offered. The first year he was in therapy I spent over twenty thousand dollars out of pocket. After several years of therapy he’s gotten better, but I can’t say he’s any better off than he would have been on his own. I don’t know if he’ll ever be capable of living on his own, so my wife and I have to prepare for the possibility that we’ll be raising him until we die.

I think his condition hits my wife harder than it does me. We’ve had angry blowups about what to do for my son, and arguments over whether we’re doing enough. She gets depressed, breaks down occasionally, and is frequently on the internet researching new therapy ideas, legislative changes for special needs education, and the latest word from doctors and therapists. A lot of what’s online is from lunatics and snake oil salesmen; since most parents of autistic children will be torn up with guilt if they don’t try everything possible, losers and thieves offer ripoff “cures” to wring cash from those parents. Which makes guys like me very cynical about any supposed new treatment, like that bullshit “gluten-free diet” that was supposed to cause drastic improvements in autistic children.

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Speaking of lunatics, snake oil and ripoffs, here are a few things not to say to the parent of an autistic child. I’ve heard a lot of well-meaning comments from people who don’t really get how bad autism is. When we first got the diagnosis, some family members tried to make me feel better by insisting nothing was wrong with my son, that they “knew a kid who didn’t say a word until he was five and he’s just fine,” and that doctors are just overdiagnosing autism in normal kids. Well, that didn’t apply to my son. He had a problem, and denying it didn’t help him or us. And I say that as a father who had a problem with denial myself.

But the hardest comments to hear are about god. I’ve come close to flying into a rage at the comment, “God only gives you what you can handle.” Any god who would do this to my son is a worthless bastard who I wouldn’t worship even if he existed. I’m sure some other parents would react differently, but I’d strongly advise you not to suggest to parents that god intentionally did this horrible thing to their child.

Another comment that’s caused a major reaction is, “You must be very strong to be able to handle having an autistic child.” No, I’m not. I didn’t choose this. I wouldn’t have chosen it. I deal with it because I have no choice, and I don’t always do a good job. I get angry. I get frustrated. I blow up. Sometimes I wish I could quit. Sometimes I’ve had enough of failed “foolproof” methods and fall back on spankings. Maybe the only “strong” thing I do is not ask why this happened to us; it doesn’t fucking matter why it happened, it doesn’t help to question it. Asking that stupid question doesn’t change shit. It is what it is, and all I can do is deal with it and hope my beautiful, loving, happy little autistic boy gets better.

And that brings me to my last point: hope. Earlier I mentioned another little boy who was diagnosed autistic. His parents were told there was almost no hope (and this boy’s father has fantasized many times of throat punching the vile, heartless doctor who casually said, “Oh, he’s got about a ten percent chance of ever being normal”). Today that little boy is living a normal life. He’s a Cub Scout, has friends, is happy and active, and almost nobody knows he was autistic. Earlier this year a different doctor said he no longer meets the criteria for autism.

He’s my other son. My autistic son’s big brother.

Not long ago, we didn’t know if he’d ever talk. We didn’t know if he had any hope of living on his own. We didn’t know if he’d ever have friends. But he’s a happy, smart little kid, with all the opportunity in the world. He’s going to be fine.

And that’s why I won’t give up on my youngest son. Fuck autism.

– CH

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Mad Duo, Breach-Bang& CLEAR!

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www.breachbangclear.com_site_images_Chris_Hernandez_Author_BreachBangClear4Chris Hernandez Mad Duo Chris (seen here on patrol in Afghanistan) may just be the crustiest member of the eeeee-LIGHT writin’ team here at Breach-Bang-Clear. He is a veteran of both the Marine Corps and the Army National Guard who served in Iraq and Afghanistan. He is also a veteran police officer of two decades who spent a long (and eye-opening) deployment as part of a UN police mission in Kosovo. He is the author of White Flags & Dropped Rifles – the Real Truth About Working With the French Army and The Military Within the Military as well as the modern military fiction novels Line in the Valley and Proof of Our Resolve. When he isn’t groaning about a change in the weather and snacking on Osteo Bi-Flex he writes on his own blog. You can find his author page here on Tactical 16.

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30 Comments

  1. Mr. Hernandez. It takes a MAN, to be a dad. Good on ya, sir. I see your focus on duty, in how you speak of your son. He may not recognize it (do children ever?), but you display it: duty, love, honor.

  2. Thank you for your article! I spent 10 years as a pediatric trauma nurse working in ER’s and PICU’s. I truly appreciate you telling your story. I have worked with many children who are burdened with this infliction. I am blessed to have a wife who is a physician and specializes in pain management. Her speciality is nerve pain so her understanding of neurology is high. This has always been a topic that the two of us have tried, in vain, to get a better understanding of. we are blessed to have three healthy girls but have friends in similar circumstance to you own. One thing we did find that was promising was acupuncture technique in the ears. Not with needles but using the fingers to squeeze the opposite ear. So right hand left ear. Left hand right ear. Then do a squat breathing in while going down breathing out while going up. Sounds like snake oil. However, it causes a crossing of the neuro pathways and has shown promise. Improvement has been documented but the mechanism of action is still not understood. If your out at Shot I will bring some of the research that has been produced that my wife has access to. Or email me back. I can only hope it helps, but I now it doesn’t hurt. Blessings!

  3. Chris:

    Your son’s greatest asset and best chance is you!

    I speak first-hand. My son is 6 and severely autistic (no language, no potty training, no social skills, etc). Believe it or not, he’s very happy-go-lucky and popular with the ladies!

    We are extremely close, b/c despite the “wall of silence”, he knows, for certain, that I will never, ever give up on him.

    Your determination makes a difference. Keep strong brother.

    PS, yeah – I was 39 when my son was born, and both me and his mother are mathematicians. Go figure.

  4. Hi Chris,
    This was written so well 🙂 Our son is now 11, almost 12. He was an escape artist as well, so I can relate, we had 12 adults at a birthday party in the rain and not 1 of them notice his escape except another child on the spectrum who was a little older, he followed my son to make sure he was safe. My son is considered severely autistic and is at a special school, he has had his up and downs like any kid, his are just a bit more extreme.
    We have pushed harder this year on the school to focus on reading as he is very intelligent, just doesn’t show it to others. One of the most core problems the general public don’t get is that autistic kids are generally of normal or greater intelligence. However not savants (like rainman).
    In their shoes of being either unable to communicate thoughts or feelings doesn’t mean that they don’t hear and/or understand everything around them.
    We are progressing and I am grateful for the support from the school and the groups locally who have got positive behaviour strategy workshops to our little town. They really have helped with the acceptance level of grief, and believe me it is grief we go through, grief for what we thought life would be like for them and ourselves and grief for our worst fears having a potential of happening at all.
    After the acceptance that this little man is who he is and we can help his development by letting go of our expectations and fears and just going with the flow of life.
    It has got easier in alot of ways as he has got older, but as he grows i fear for the sheer size that he may very well become with all that frustration and pure emotion.
    As for the stresses that are placed on the family, talk to each other!! You will all have good and bad days, some more than others, but bottling it or venting in nasty tones helps no-one, organise to have short breaks where self is the only thing to worry about, organise drives or places away from day to day stuff has no hold. Find different approaches to scenarios, don’t just give up and put in too hard basket because there was a meltdown, who knows if he had warning that he was going to have to leave and that the event has lots of people he may be able to self prepare better. There was a time when all sounds were so painful to our son that we went everywhere with earmuffs, now he has managed to control/displace this noise he only wears them on extremely anxious times. Am babbling a little, ok alot, but I find sharing has been a help to people understanding and people coping.
    Have a safe and happy holidays all!!

  5. You sir kickass. First of all, thank you for your service and doing a job most wouldn’t signup for.
    I’m tired of reading the PC crap from the autism community. My background is early child education and development/Pre-K teacher. I’m not teaching at the moment but you would think my sentiments would be the softer take on ASD and it’s not. My husband and I will deal with my sons autism and we will do all things possible. He will be 3 in February. I knew at 14 months he had atypical behaviors. He was officially diagnosed a month before his 2nd birthday. Even before that, I got the ball rolling with ST, PT and OT at 18 months. While I can have the Autism can suck it, I will advocate that early intervention is key. Like you said, parents, please take action if you suspect any developmental issues that relates to the whole child (social/emotional, physical,etc)
    I WOULD LIKE THIS POINT TO BE HEARD: YOU ARE YOUR CHILD’S MOST IMPORTANT ADVOCATE. BE PROACTIVE. PEDIATRICIANS MOSTLY WILL TELL YOU TO WAIT. THIS IS SOMETHING THAT I HAD TO DEAL WITH ALOT WHEN APPROACHING MY STUDENTS PARENTS IF I SAW RED FLAGS. What’s most frustrating is when a preschool teacher’s word isn’t valued as much as a pediatrician who isn’t in the field day in and day out. Parents, please trust your gut and your children’s teachers!
    Merry Christmas!

  6. If there’s nothing else our son has taught us, it’s how to be better people…both to him and each other. It’s trite, but true.

    Also true is that few parents can begin to understand the fright, freight and fucking exhaustion that comes with being a parent of a child on the autism spectrum.

    Fright from the moment you get the chilling news confirming your nagging suspicion that maybe a milestone hasn’t been met, or wondering why at two and a half years old he’s not really talking. Second guessing can cripple relationships and it helps (but doesn’t) that no one truly knows what the best treatment might be, or what really causes autism.

    Freight is not only the constant question of whether you’re doing enough or the right things, but the ever present specter of Christmas future…will he be able to cope on his own? Can we possibly give him (and have him retain/practice) the skills required to be independent? It weighs night and day, which can cause some serious exhaustion.

    I start every day with two thoughts: First, I’m a lucky guy. Count your damn blessings. Second, suck it up buttercup. Some days are good, some are bad, and then there’s life. Enjoy every hug you get, every second of eye contact, and the knowledge that no one in this life is going to love that child like you do, so do it for all you’re worth.

    If you’ve got a child with any of the classic markers mentioned above, seek help immediately. Early intervention has made an incredible difference in our son’s life, and though we still harbor some reservations about his future, it’s certain that he’s better off having had multiple therapies as he’s grown.

    Good article, MDC.

    1. Jefferson,

      I try to stay positive, like you do with your two daily thoughts. I always remind myself and my wife that we’re relatively lucky; we’ve met many other parents whose kids have far worse symptoms and a far bleaker outlook. Even with all the problems, I enjoy my son. And if we’re going to have him with us the rest of our lives, well, that ain’t so bad.

      My son has also been in ABA, speech and OT for years. He’s about to start a public school program, and we’re keeping our fingers crossed on that.

      I hope our kids make vast improvements this coming year. 🙂

  7. Dear Chris,
    Another comment said “best thing you have written” I don’t know about that, I do know that it was from the heart and I thank you for it.
    Have a great Christmas and a better new year.

  8. Just want to let the parents know that your kids can lead a normal or as normal life as possible!

    My wife is a psychologist (PhD) and she has several clients with autism (both kids and teens)that she has been able to do amazing things with. She is truly gifted but my point is that there is help out there but the sad part is that it is not always easy to find. We are an evidence based practice so our treatment is based on research and not on something a therapist thinks works but that cannot be replicated. We get clients whose parents are desperate to find help for their child and these parents tell some truly sad stories about the care or lack of, that they have received.

    It is something that both the parents and child (depending on age) are involved with by learning strategies to both cope with the person with autism and to help the care giver.

    Sorry to rant but I really do see the toll it takes on parents and how it affects the family overall. I have found these parents willing to go to almost any length to help their kids.

    Yes, keep looking as there is qualified help out there and it is unfortunate that you need to sort through a bunch of bull shit to find it sometimes.

    Best of luck and there is hope just keep working on it!

  9. Sir, thank you for sharing. The struggle is real. I identify with what you wrote. My wife and I have two sons diagnosed with autism, our first and third son. We have good days and we have bad days. There is a lot of stress on our marriage and and their three other siblings. But we never give up. We are thankful for our boys and the unique ways they view the world.

    Again sir, thank you for sharing your experience and Merry Christmas.