Andrewtism: A Personal Transformation While Parenting an Autistic Child

Andrewtism

personal transformation in parenting an autistic child

Copyright 2014 Ken Smyth

Smashwords Edition, License Notes

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Chapters

Andrewtism; a definition

Andrew in a Nutshell

In the Beginning There Was SuperHoo – infant/toddler years

Pay No Attention to the Man Behind the Curtain – 3 years old

Scruffy Gets Hit by an Oldsmobile – 3 years old

Hold on to the Chair – 4/5 years old

Where Is the Cure? – 4/5 years old

Auditioning for the Ya-Ya Sisterhood – 4 years old

Collateral Damage – 4 years old

Where’s the magic sponge? – 5 years old

Experimenting at Home – 5/6 years old

The Noise Slowly Fades - 7 years old

I become a Jedi Master (in my own mind) – 7 years old

More on Relationships

The Tao of Andrewtism – 7-12 years old

Saved by the Nerds – 12-15 years old

‘Tween a Rock and a Hard Place – 12-15 years old

Kicking Fear in the Teeth – 14 years old

Hitting the High Note – 15 years old

Building Up the Muscle

Andrewtism: A Revised Definition

Andrewtism; a definition

In the pages that follow, I will introduce you to the definition of a new term I call Andrewtism. You may think me crazy to write an entire book for the purpose of adding a new definition into the English vernacular. Actually I’m crazier than you may think because I would like to see countless definitions added by parents that have a kid on the autistic spectrum. Andrewtism is what provided me the many answers I needed in my journey, so maybe each family needs their own definition for their own journey. Having such definitions might empower many other parents to cope with autism the way Andrewtism has allowed our family to find our way. The core of Andrewtism acknowledges our personal journeys, but that only scratches the surface of where the concept of Andrewtism leads.

Andrewtism is something that changes as I move further along the road through autistic life with my son, Andrew. The definition of Andrewtism grows as I grow. However, the true power of Andrewtism is not just in understanding what Andrewtism is. A major benefit of Andrewtism is defining what it is not.

Andrewtism (an-droo-tizm) n : 1. different than whatever you currently think of as autism

Just as my definition of Andrewtism grows over time, you will see the definition of Andrewtism grow over the course of this book. To begin explaining Andrewtism, I have to start by writing the one statement that I have dreaded most over the years:

my son Andrew was diagnosed autistic at age 3 ½.

I hate writing that statement. I grit my teeth and shudder just writing it. I have hated speaking it aloud countless times when meeting new health care professionals and other people involved in Andrew’s care. I have begrudgingly choked out that statement to teachers, soccer coaches, babysitters, and possibly even that geriatric Wal-Mart greeter with unsightly ear hair and a desperate need of a breath mint. The main reason I hate that statement is because it defines Andrew every time I say it. Well, not anymore! I will never have to say it again if I am successful in my hair-brained scheme to get the term Andrewtism officially recognized by the American Medical Association, Merriam Webster, and Wal-Mart Inc.

The reason I wince every time I say autistic is that it does such a bad job of defining Andrew’s issues. It instantly defines him in the minds of everyone that hears the statement, yet it mischaracterizes him in many ways. What’s worse is that I’m convinced that it is just a transitory label in the evolution of medical science. It has only existed as a definition since the 1940’s, and it most certainly will be replaced with something else in the future. I’m quite certain that many years from now they’ll be labeling Andrew’s condition as something like Barnes-Fuzzworth disorder. We’ll chuckle about how naive we were back around the turn of the 21st century when our rudimentary understanding of the disorder missed so many crucial distinctions. Of course, many years after that, Barnes and Fuzzworth will be known as pioneers that took the first small steps to enlightening us to what we will then know to be the six classifications of Sandcastle Synapse Syndrome. Many years later… well, I think you get the picture. We are over-using a definition that truly does not define a known physical condition; it only defines a known set of behaviors. It’s the best we’ve got, but it sucks. Our definition of autism is similar to a 14th century doctor treating stomach disorders. Nowadays an internist can differentiate stomach cancer from acid reflux. 500 years ago it was all the same because when all you can define is the outward symptom of abdominal pain, that’s where your definition ends. We are not defining the root condition when we define autism. We are only defining behaviors that could come from multiple different specific physical conditions in the brain.

Andrewtism helped me because it let me inherit the parts of autistic spectrum disorders that apply to Andrew, but it let me leave behind lots of the other baggage that came along with the standard definition. I had a very hard time figuring out how to best help my son until I figured out the concept of Andrewtism.

Before I start over-hyping Andrewtism, let’s set some expectations. The concepts of Andrewtism do not form a blue print of how every parent can win a 15-round slugfest against autism or magically cure their children. It is not a ground-breaking behavioral methodology to whip your kid into shape and get him/her to start behaving normally (based upon however you measure our society’s perception of normal). It is simply a way of expressing a state of mind from one Dad going through the battle of a lifetime. It characterizes a transformed mental approach that helped me along my path with Andrew. Andrewtism was my way of boiling down the infinitely complex world of parenting a child on the autistic spectrum into something that my little brain could grab onto. It is meant to help people understand my story and Andrew’s story. As you will learn in the coming pages, the whole concept of Andrewtism is to emphasize that the road of autism was a uniquely personal journey for me that required significant personal growth. I believe that autism is different for every kid afflicted and for every parent affected. If there is such thing as a silver bullet for fighting autism, I’ve never seen it. I haven’t even seen any regular bullets. Heck, it took me years just to work my way up to sticks and stones. If you want concrete answers on what autism is or how to stamp it out, you won’t find any of those from me. All Andrewtism can offer is one view of how to make sense and make peace with parenting a child with challenges similar to Andrew’s. Andrewtism was my key to acceptance, clarity, and eventually the road back to happiness.

If you are a parent feeling lost in a sea of confusion after your child’s autistic spectrum diagnosis, then learning about Andrewtism may be just what the doctor ordered (pun intended). The concept of Andrewtism helped me out of the confusion, but understanding the basics of autism was the first step. While I’ve bashed the term autism a bit, it is true that having Andrew’s autistic diagnosis was a blessing for me in some ways. There is no doubt that the term autism provided a high level framework that helped me understand some basics about a subset of Andrew’s behaviors. It also identified some strategies that helped Andrew along his journey.

My main problem with calling Andrew autistic is that it’s too broad a definition to be relevant to me in most situations. When I use that term I can’t help but feel like I’m playing Jeopardy with a 2nd grader’s vocabulary. It’s like Alex Trebek is asking me to explain the differences between a Terrier and a Rottweiler, but the best I’ve got is what is a doggy? Our family has a small terrier named Baxter. Baxter is a little wimp. Comparing him to a Rottweiler is ludicrous. Both dogs may drool on the carpet and lift their legs when they pee, but other than that the differences far outdistance the similarities. It seems silly to label so many kids that are drastically different into one big autistic lump. I guess the crux of my problem is heavily rooted in the sad fact that kids are labeled autistic. If autistic truly meant nothing more than a high level genre or genus, maybe I would not have such a problem with it. However, the truth of the matter is that it is a label moreso than anything else, and it tricks most of us into pre-conceptions that go far beyond where they should.

Calling autism a spectrum disorder helps shake some of the issue that I have with the term, but I have issues with spectrum disorder as well. Spectrum disorder doesn’t do me as a parent much good at the end of the day. If I asked a ten year old to describe what the fancy term spectrum disorder really means, the loose translation would be something like, they have no idea how to describe all the parts that are in this big glob of stuff. It’s a lofty definition that hides the naked truth. Professionals have frighteningly little idea of what goes on in these kids’ heads, but they know that each little skull has things rambling around differently than in all the other little skulls.

I’m sure that the term is quite useful to professionals as some broad classification of similar afflictions. Speaking to neurologists about autism makes me feel like I’m discussing the mating habits of orioles with an ornithologist from the 1400s (who might be the cousin of that stomach doctor). Back then they couldn’t differentiate any of the dozen or so different varieties of oriole, so they’d probably just tell me that all the feathery little varmints were on the bird spectrum.

Spectrum disorder may help various professionals in viewing some grand scheme of medical research, but please don’t try to use that term with me when I am concerned with my son’s specific set of development challenges. I hear that term all the time, and I always wonder how a term of such massively sweeping generality could be of help when trying to determine why my son is having trouble picking up the phone to call a friend. It saddens me to think that parents are so starved for knowledge in the area of autism that we latch onto such nondescript terms during the pursuit of what is in my opinion one of the most personal of struggles – children overcoming the challenges of autistic spectrum disorders to further their own personal growth.

Please don’t get bent out of shape thinking that I’m trying to cast stones or belittle neurologists, researchers, and others professionals that work to help us understand more about autism. I am just a practical guy that had to reach some harsh realizations as I travel along Andrew’s journey with him. Maybe I am casting stones, but only at people that can’t admit to themselves that even though they have a brain full of knowledge on autism, the amount that they don’t know far outweighs the amount that they do know. In fairness to the professionals that might find benefit from the terms autism and spectrum disorder, I’m not sure they ever asked laypersons like me to start using the terms. I suspect that some professionals may have the same issue with its overuse. All I know is that learning about the specifics of many other people’s journeys was more helpful to me because when I was dealing with specific issues, generalities were of little use. I guess I offer my specific experiences and observations in the hope that it helps others move forward with their own grieving process.

Yes, I said grieving. As a parent of a child diagnosed autistic, I can tell you that I was smack in the middle of a (potentially life-long) grieving process. It’s not a cut-and-dry grief like when cute little scruffy gets hit by the neighbor’s Oldsmobile. Scruffy-grief is definite and concrete. autistic grief was fluid, uncertain, and full of ignorant glimmers of hope and veiled disappointments. The term spectrum disorder was one of the many veils that made this process so gut-wrenching. I was not grieving the loss of something tangible like good old scruffy. autism had taken away my hopes and dreams for Andrew’s future. Grieving is about facing things, then moving on. My emotions couldn’t come to grips with things that my mind couldn’t nail down, so moving past my grief was difficult.

After I made my way through shock, denial, grumpy, sneezy and all the other phases of my grief, the concept of Andrewtism was waiting for me at the other end. That’s the simple reason why Andrewtism can benefit others. If others can understand the personal transformation process that helped find the path for me and Andrew through this jungle, maybe their path can be a little easier.

If you are in the same place I was many years ago, please know that there is undoubtedly hope. I can attest that living with autism can be a truly wonderful thing. While I still have many autistic-related concerns for Andrew, they are concerns about how he will succeed, not if he will succeed. Andrew has experienced more success in his life than failure. He’s a great kid.

When I say that he is a great kid, let me set the record straight on what that means. I am going to be telling things as they are. I’m not very politically correct, nor am I afraid to write the honest truth. When I hear parents of special needs kids say, he’s a great kid I usually interpret that as, he’s a great kid if I judge him by an extremely low standard of how I wish my kid could behave. We adjust our standards to accept the challenges of our kid. I can truthfully admit that there were times when he was not a great kid by my original definition. At times he was a very difficult kid and fell far short of my ideals of how my kid would behave. Just because I can admit that fact doesn’t mean that I didn’t love him with all my heart. Let’s face it: it’s easy to love and appreciate the little cherub